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  1. Admin

    GDPR

    Your GDPR questions answered Individual Rights The right to be informed Invision Community has a built in privacy policy system that is presented to a new user, and existing users when it has been updated. What should your privacy policy contain? I personally like the look of SEQ Legal's framework which is available for free. This policy covers the important points such as which cookies are collected, how personal information is used and so on. There may be other services out there offering similar templates. Right to erasure I personally feel that everyone should listen to "A Little Respect" as it's not only a cracking tune, but also carries a wonderful message. The GDPR document however relates to the individuals right to be forgotten. Invision Community allows you to delete members. When deleting members, you can elect to remove their content too. There is an option to keep it as Guest content, thus removing the author as identifiable. It's worth using the 'keep' option after researching the user's posts to make sure they haven't posted personal information such as where they live, etc. Emailing and Consent Invision Community has the correct opt-in for bulk emails on registration that is not pre-checked. If the user checks this option, this is recorded with the member's history. Likewise, if they retract this permission, that action is also recorded. When you edit the terms and conditions or privacy policy, all users are required to read it again and opt-in again. Cookies A lot of GDPR anxiety seems to revolve around these tiny little text files your browser stores. If you read the GDPR document (and who doesn't love a little light reading) then you'll see that very little has actually changed with cookies. It extends current data protection guidance a little to ensure that you are transparent about which cookies you store. Invision Community has tools to create a floating cookie opt-in bar, and also a page showing which cookies are stored and why. This is the page that you'd edit to add any cookies your installation sets (if you have enabled Facebook's Pixel, or Google Analytics for example). Your GDPR Questions Now let's look at some questions that have been asked on our community and I'll do my best to provide some guidance that should help you make decisions on how to configure your Invision Community to suit your needs. Alan!! Is the soft opt-in cookie policy enough? What about the IP address stored in the session cookie? Great question. There's conflicting advise out there about this. The GDPR document states: The ICO states that session cookies stored for that session only (so they are deleted when the tab / window is closed) are OK as long as they are not used to profile users. This is re-enforced by EUROPA: My feeling is that GDPR isn't really out to stop you creating a functioning website, they are more interested in how you store and use this information. Thus, I feel that storing a session cookie with an IP address is OK. The user is told what is being stored and instructions are given if they want to delete them. Given the internet is very much driven by IP addresses, I fail to see how you can not collect an IP address in some form or another. They are collected in access logs deep in the server OS. Finally, there is a strong legitimate interest in creating a session cookie. It's part and parcel of the website's function and the cookie is not used in any 'bad' way. It just allows guests and members to retain preferences and update "last seen" times to help deliver content. Do I need to delete all the posts by a member if they ask me to? We have many large clients in the EU with really impressive and expensive legal teams and they are all unanimous in telling us that there is no requirement to delete content when deleting a user's personal information. The analogy often given is with email: once someone sends you an email you are not obligated to delete that. The same is true with content posted by a user: once they post that content it's no longer "owned" by them and is now out in public. Ultimately, the decision is yours but do not feel that you have to delete their content. This is not a GDPR requirement. What about members who haven't validated? They're technically not members but we're still holding their data! No problem. The system does delete un-validated users and incomplete users automatically for you. You can even set the time delay for deletion in the ACP. What about RECAPTCHA? I use this, and it technically collects some data! Just add that you use this service to your privacy policy, like so: I see many companies emailing out asking for members to opt back in for bulk mail, do I need to do this? Short answer: No. Since Invision Community 4.0, you can only ever bulk email users that have opted in for bulk emails. There's no way around it, so there's nothing to ask them to opt-in for. They've already done it. There is a tiny wrinkle in that pre 4.2.7, the opt-in was pre-checked as was the norm for most websites. Moving forward, GDPR asks for explicit consent, so this checkbox cannot be pre-ticked (and isn't in Invision Community 4.2.7 and later). However, the ICO is clear that if the email list has a legitimate interest, and was obtained with soft opt-in, then you don't need to ask again for permission. What about notifications? They send emails! Yes they do, but that's OK. A notification is only ever sent after a user chooses to follow an item. This falls under legitimate interest. There is also a clear way to stop receiving emails. The user can opt-in and opt-out of email as a notification device at their leisure. Do I need to stop blocking embeds and external images? No. The internet is based on cross-linking of things and sharing information. At a very fundamental level, it's going to be incredibly hard to prevent it from happening. Removing these engaging and enriching tools are only going to make your community suffer. There's no harm in adding a few lines in your privacy policy explaining that the site may feature videos from Vimeo and Youtube as part of user contributions but you do not need to be worried. As stated earlier, GDPR isn't about sucking the fun out of the internet, it's about being responsible and transparent. Phew. Hopefully you've got a better understanding about how Invision Community can assist your GDPR compliance efforts. The best bit of advice is to not panic. If you have any questions, we'd love to hear them. Drop us a line below. Edited May 12 by Matt GDPR updates for Invision Community 4.3.3 Unless you've been living under a rock, or forgot to opt-in to the memo, GDPR is just around the corner. Last week we wrote a blog answering your questions on becoming GDPR compliant with Invision Community. We took away a few good points from that discussion and have the following updates coming up for Invision Community 4.3.3 due early next week. Downloading Personal Data Invision Community already has a method of downloading member data via the member export feature that produces a CSV. However, we wanted Invision Community to be more helpful, so we've added a feature that downloads personal data (such as name, email address, known IP addresses, known devices, opt in details and customer data from Nexus if you're using that) in a handy XML format which is very portable and machine readable. You can access this feature via the ACP member view The download itself is in a standard XML format. A sample export Pruning IP Addresses While there is much debate about whether IP addresses are personal information or not, a good number of our customers requested a way to remove IP addresses from older content. There are legitimate reasons to store IP addresses for purchase transactions (so fraud can be detected), for security logs (to prevent hackers gaining access) and to prevent spammers registering. However, under the bullet point of not storing information for longer than is required, we have added this feature to remove IP addresses from posted content (reviews, comments, posts, personal messages, etc) after a threshold. The default is 'Never', so don't worry. Post upgrade you won't see IP addresses removed unless you enter a value. This new setting is under Posting Deleting Members Invision Community has always had a way to delete a member and retain their content under a "Guest" name. We've cleaned this up in 4.3.3. When you delete a member, but want to retain their content, you are offered an option to anonymise this. Choosing this option attributes all posted content to 'Guest' and removes any stored IP addresses. Deleting a member Privacy Policy We've added a neat little feature to automatically list third parties you use on your privacy policy. If you enable Google Analytics, or Facebook Pixel, etc, these are added for you. The new setting Finding Settings Easily To make life a little easier, we've added "GDPR" as a live search keyword for the ACP. Simply tap that into the large search bar and Invision Community will list the relevant settings you may want to change. These changes show our ongoing commitment to helping you with your GDPR compliance. We'll be watching how GDPR in practise unfolds next month and will continue to adapt where required.
  2. Admin

    Today is World Lupus Day!

    Today, is World Lupus Day! Join Us and tell your story!
  3. Admin

    Tabbles

    I have been using Tabbles since it started and seen how it has developed. Its developer, Andrea, is someone who takes customer support very seriously. Whenever I have had a query or report a bug, he responds quickly. In addition, he has been very generous and has donated Tabbles to help me in my research. I am an academic researcher, which means reading hundreds of articles for a project. It's easy to create a new project, or container/virtual folder for the project, but each article may have aspects which can be tagged separately. For example, I am beginning a new project on contemporary racism. I created a new Tabble called Racism, which I colour coded - just as I used to do when I used cards for my research at university. I have hundreds of articles, from other projects, which are suitable for this project. It's easy to drop these into this new Tabble, from completed projects. At the same time, I can tag them to remind me they were also part of another Tabble or project. Many of the articles or information can be combined & Tabbles allows me to view these by using the "plus" sign.Thus,I can open the Racism Tabble & open two or more files at the same time. This "combine" feature means I can group together certain articles. For example, I might have a folder, within the Racism Tabble, called 19th century. Within this, I might want to put certain articles relating to 19th century. I can open & "combine" this specific information, from the articles, on nationalism in Germany. I might have a paper that I recall is a PDF & I can click on "New extension-tabble" because Tabbles automatically notes the extension of the file and locate the PDF. As I use the web for my research, Tabbles has a feature for the browser. I predominantly use Chrome and this means I can tag these articles for future reference. Every time I save an article, Tabbles lets me "tag" it via a pop-up my desktop.I can even create another Tabble or virtual folder, if necessary. As I research on the web, I can also use Tabbles to store its contents via tagging. One of the best features is to tag a file/article based, for example, on its "name". For this, Tabbles has a system called "auto-tagging" using the auto-tagging rule editor. Each time an article/file has the word "racism" I can use Tabbles to put it into "Racism" Tabble; a pop-up will allow the one-click tagging system in Tabbles. Without Tabbles, research would take much longer. You don't have to learn relational databases as Tabbles is intuitive. I cannot recommend Tabbles enough. I would be lost without it. If you are interested, you can find Tabbles here: http://tabbles.net/ ...
  4. Admin

    TABBLES 5

    I want to extend my thanks to Andrea at Tabbles: http://tabbles.net/quick-intro/ What is Tabbles, in a few words? Tabbles is a tagging software that allows to tag any kind of file, emails (in Outlook), and bookmarks. It helps you to tag and organize your files independently from folders and find them when you don’t remember where they are, but only what they are about. Tabbles allows you to combine tags with a few mouse clicks, immediately finding the file, regardlessly of what folder or disk it is stored on. It even tells you what drive you need to connect, in case the file is archived on a disconnected drive. A tabble is a both a tag and a virtual folder Tabbles are tags that you apply to files and other data; but they are also special folders, because they can be combined, intersected and subtracted from each other, to create dynamic combinations of files. You can put files in as many tabbles as you want, without duplicating them. No disk space will be wasted. The magic starts when you try to open the tabble and combine it with other tabbles, to find what you need in a natural way, without the need to know which directory or drive contains the files you need. You can also define powerful rules to tag files automatically. You can also define powerful rules to tag files automatically. Tags can be combined, allowing to find a file in many different paths The combine function allows you to find files and other documents by describing them the way you find more natural. Tabbles adapts to the way you think, allowing to find a file in many different paths. For example, you can reach the same file by clicking Pictures > John smith > vacations > beach or by clicking Year 2010 > Trip > India > John Smith > Mary Evans, even though that file only has a single physical path, like “Y:\archived\2010\Trip-to-india\Camera\BR0000223”. A physical path which you most likely do not remember! Add to all this that the drive containing the file is probably disconnected, and you would have to attach all your drives in sequence to find the file. In short, with Tabbles you get the power of a relational database and the usability of a pocket calculator! Share your tagging and collaborate In a corporate environment with many users and machines, users can share some or all of their tags, so that each user can find files based on tags applied by colleagues. Tabbles stores its tags into a Microsoft SQL Server databases, and allows for tag-sharing on local drives, shared drives as well as on cloud sync folder (like Dropbox, OneDrive etc.). The system administrator can manage users, sharing groups permissions and licenses via an Admin control panel.
  5. Invision Community 4.3 We are happy to announce the new Invision Community 4.3 is nearly available! Here is the list of what's new and we will follow up with individual blog entries going into detail about each new feature every couple days over the next few weeks. There will be a public preview in late January and we should go to public beta soon after that. Keep an eye on our blog for updates! Some highlights in Invision Community 4.3 include... Improved Search We now support Elasticsearch for scalable and accurate searching that MySQL alone cannot provided. There are also enhancements to the overall search interfaces based on your feedback. Emoji Express yourself with native emoji support in all editors. You can also keep your custom emoticons as you have now. Member Management The AdminCP interface to manage your members is all new allowing you easier control and management of your membership. Automatic Community Moderation You as the administrator set up rules to define how many unique member reports a piece of content needs to receive before it's automatically hidden from view and moderators notified. Clubs The new Clubs feature has been a huge hit with Invision Community users and we are expanding it to include invite-only options, notifications, exposure on the main community pages, paid memberships, and more. Custom Email Footers Your community generates a lot of email and you can now include dynamic content in the footer to help drive engagement and content discovery. New Gallery Interface We have reworked our Gallery system with a simplified upload process and more streamlined image viewing. The full list follows. Enjoy! Content Discovery We now support Elasticsearch which is a search utility that allows for much faster and more reliable searching. The REST API now supports search functions. Both MySQL and Elasticsearch have new settings for the admin to use to set search-defaults and default content weighting to better customize search logic to your community. Visitors can now search for Content Pages and Commerce Products. When entering a search term, members now see a more clear interface so they know what areas they are searching in and the method of search. Member Engagement Commerce can now send a customizable account welcome email after checkout. You can whitelist emails in the spam service to stop false-positives. REST API has many enhancements to mange members. Ability to join any OAuth service for login management. Invision Community can now be an OAuth endpoint. Wordpress OAuth login method built in. Support for Google's Invisible ReCaptcha. Groups can be excluded from Leaderboard (such as admins or bot groups). All emails generated by Invision Community can now contain admin-defined extra promotional text in the footer such as recent topics, Our Picks, and more. Admins can now define the order of Complete Your Profile to better control user experience. Clubs Option to make a Club visible but invite-only Admins can set an option so any Club a member is part of will also show in the parent application. So if you are in a Club that has a Gallery tab then those image will show both in the Club and in the main Gallery section of the community. Club members can now follow an entire Club rather than just each content section. There is a new option on the Club directory page for a list view which is useful for communities with many Clubs. If you have Commerce you can now enable paid memberships to Clubs. Admins can set limits on number of Clubs per group. If a group has delete permission in their Club, they can now delete empty containers as well. Members can ignore invitations. Moderation and Administration Unrestricted moderator or administrator permission sets in the AdminCP are visually flagged. This prevents administrator confusion when they cannot do something as they will be able to quickly see if their account has restrictions. You can choose to be notified with a new Club is created. Moderators can now reply to any content item with a hidden reply. Download screenshot/watermarks can now be rebuilt if you change settings. Support for Facebook Pixel to easily track visitors. Moderators can now delete Gallery albums. Automatic moderation tools with rules to define when content should auto-hide based on user reports. Totally new member management view in AdminCP. More areas are mass-selectable like comments and AdminCP functions for easier management. New Features Commerce now has full Stripe support including fraud tools, Apple Pay, and other Stripe features. Commerce packages can now have various custom email events configured (expiring soon, purchased, expired). Full Emojii support in the editor. Setting so when someone is typing in an editor, other members will see a "Member X is typing..." status in the editor view. Complete overhaul of the Gallery upload and image views. Announcements system overhaul. Now global on all pages (not via widget) and new modes including dismissible announcements and top-header floating bar option. Many new reports on traffic and engagement in the AdminCP. Blog has new view modes to offer options for a traditional site blog or a community multi-member blog platform. The content-starter can now leave one reply to Reviews on their item. Commerce now makes it much easier to do basic account-subscriptions when there is no product attached. Useful Improvements Forums has a new widget where you can filter by tags. If tags are not required, the tag input box now indicates this so the member knows they do not have to put in tags. Member cover photos can now be clicked to see the full image. Any item with a poll now has a symbol on the list view. Twitch.tv embed support. You can now update/overwrite media in the Pages Media Manager. Mapbox as an additional map provider to Google Maps. Technical Changes Direct support for Sparkpost has been removed. Anyone currently using Sparkpost will automatically have their settings converted to the Sparkpost SMTP mode so your email will still work. Your cache engines (like Redis) will be checked on upgrade and in the support tool to ensure they are reachable. Third-party applications will now be visually labeled to distinguish them from Invision Community official applications. The queued tasks list in the AdminCP is now collapsed by default as queued tasks are not something people need to pay much attention to during normal operations. When upgrading from version 3 series you must convert your database to UTF8 and the system saves your original data in tables prefixed with orig. The AdminCP now alerts you these are still present and allows you to remove them to reclaim storage space. On new installs there are now reasonable defaults for upload limits to keep people from eating up storage space. Categories in all apps (forums, gallery albums, databases, etc.) no longer allow HTML in their titles. This has been a concern both in terms of security and usability so we were forced to restrict it. Large improvements to the Redis cache engine including use for sessions. The login with HTTPS option has been removed and those who were using it will be given instructions to convert their entire community to HTTPS. Images loaded through the proxy system now honor image limits for normal uploads.
  6. Sex Differences in Lupus Mortality Mariah Zebrowski Leach, JD, MS Monday, December 4, 2017 Lupus A comprehensive US population-based study identified an average 22-year and 12-year deficit in life expectancy among females and males with systemic lupus erythematosus (SLE), respectively, compared with the general population. Background In the United States, SLE is a source of significantly decreased life expectancy. While marked differences have been observed between the sexes in terms of the incidence, prevalence, and clinical manifestations of SLE, this area is still poorly understood. Falasinnu and colleagues1 at Stanford School of Medicine identified sex-based differences in the causes of death among SLE decedents in the United States and recognized clinically relevant comorbidities that may warrant careful consideration in patients’ clinical management. The study This study examined SLE-related deaths using the 2014 National Center for Health Statistics multiple cause of death (MCOD) database, a population-based electronic medical recording of all death certificates issued in the United States. The analysis considered not only the number of death certificates listing SLE as the underlying cause of death, but also those listing SLE in general. Demographic information considered included age, race/ethnicity, sex, educational attainment, foreign-born status, marital status, and pregnancy status. SLE decedents were compared with non-SLE decedents in the general population belonging to the same age group. The findings In 2014, there were 2,660,497 deaths in the United States, of which 2036 (0.1%) listed SLE among the causes of death. Approximately 86.2% of SLE deaths occurred among females, with a median age at death of 59 years and the highest proportion of deaths occurring between 45 and 64 years of age. In comparison, the overall median age at death for females in the general population was 81 years, and the majority of deaths occurred among females over 65 years of age. Black females experienced the greatest burden of SLE mortality. Approximately 32% of all female SLE decedents were black, compared with only 11% of non–SLE-related deaths in the general population. Female decedents with SLE had a slightly higher proportion of foreign-born individuals than the general population, but there were no other significant demographic differences. The most frequently listed comorbidities among female decedents with SLE were septicemia (4.32%) and hypertension (3.04%). Among male decedents with SLE, the median age at death was 61 years, compared with 73 years in the general population. Of male decedents with SLE, 23.5% were black, compared with only 12% in the general population. The age-standardized mortality was highest among American Indian males. There were no other demographic differences related to SLE among male decedents. The most frequently listed comorbidities among male decedents with SLE were heart disease (3.70%) and diabetes mellitus with complications (3.61%). Implications for physicians and future research This study offers an opportunity to better describe the association between SLE and related comorbidities in the context of mortality, although the MCOD data have a number of limitations. Inaccuracy on death certificates can lead to the underestimation of the SLE mortality burden, and researchers were unable to differentiate between causes of death that were related to the natural age process, disease activity, and drug therapy. Still, the MCOD data provide a comprehensive understanding of the population-based burden of SLE mortality. While female SLE patients tend to have more frequent disease exacerbations, male patients appear to have significantly greater multisystemic damage accrual and disease severity. Greater disease severity among male SLE patients may be related to under diagnosis due to selective attention given to females by physicians during clinical decision-making. This potential for gender bias needs to be carefully considered. Racial minorities generally have a disproportionately higher burden of mortality. The scope and degree of these differences in SLE are particularly pronounced, with mortality rates among black females nearly four times as high as those in white females. “Our findings reinforce the urgent need for interventions that reduce morbidity and mortality in patients with SLE to improve health outcomes and ultimately reduce health disparities,” the researchers write. They note that novel translational research programs are currently underway to attempt to address these disparities. Clinically relevant comorbidities also need to be considered more carefully in the course of patients’ clinical management and the natural history of SLE. This study revealed future targets for the investigation of sex-based differences and directions for epidemiological research. “A comprehensive understanding of causes of death and the related comorbidities can improve clinical diagnostic and therapeutic strategies, impact survival outcomes in patients living with SLE, and enhance population-based disease surveillance estimates,” the researchers conclude. References: 1. Falasinnu T, Chaichian Y, Simard JF. Impact of sex on systemic lupus erythematosus-related causes of premature mortality in the United States. J Womens Health (Larchmt). 2017;26:1214-1221. doi: 10.1089/jwh.2017.6334.
  7. Environmental Factors Tied to Lupus Gregory M. Weiss, M.D. Tuesday, December 5, 2017 Lupus Key points • Ultraviolet light may cause flare-ups in systemic lupus erythematosus (SLE). • The chemicals found in cigarette smoke can worsen the symptoms of SLE. • Estrogen analogues such as oral contraceptives and bisphenol A (BPA), a substance used to make plastic bottles, may increase the risk of SLE. Background SLE affects women and African Americans disproportionately. Dr. Gaurav Gulati at the University of Cincinnati in Ohio points out that even though we have treatments for lupus, a complete understanding of its etiology and progression is lacking. Although genetics clearly plays a role in SLE, it appears that environmental factors may act as triggers in those who are susceptible. Dr. Gulati conducted a review of the literature related to SLE and environmental versus genetic factors; he presented his findings recently in Seminars in Arthritis and Rheumatism. The study A systematic review was conducted that looked at over 100 studies focused on SLE. The results • A triad of factors was found in one study that linked a patient’s genetics, how the patient’s DNA changes over time, and exposure to environmental factors to the development and course of SLE. • Twin studies reveal only a 24% concordance of SLE in identical siblings; this points to a conclusion that a combination of genetic predisposition and environmental factors is involved in the development of lupus. • Heavy metals and other trace elements may be triggers for SLE; uranium, lead, and cadmium are linked to autoimmunity. • Elements such as mercury, nickel, and gold have been implicated in delayed hypersensitivity and inflammation, and a higher rate of lupus has been noted among dental workers. • An increase in SLE has been found in women who take oral contraceptives and in those exposed to xenoestrogens such as BPA, a chemical found in plastics. Implications for physicians • Physicians and particularly rheumatologists who treat patients with SLE should vigorously encourage positive lifestyle modifications such as smoking cessation and avoidance of direct sunlight. • Patients with SLE should be advised to always wear sunscreen. • Rheumatologists should provide regular surveillance to their patients with SLE as changes in disease activity and treatment are warranted. References: Gulati G, Brunner HI. Environmental triggers in systemic lupus erythematosus. Semin Arthritis Rheum. 2017 Oct 5. pii: S0049-0172(17)30469-9. doi: 10.1016/j.semarthrit.2017.10.001. [Epub ahead of print]
  8. Sex Differences in Lupus Mortality Mariah Zebrowski Leach, JD, MS Monday, December 4, 2017 A comprehensive US population-based study identified an average 22-year and 12-year deficit in life expectancy among females and males with systemic lupus erythematosus (SLE), respectively, compared with the general population. Background In the United States, SLE is a source of significantly decreased life expectancy. While marked differences have been observed between the sexes in terms of the incidence, prevalence, and clinical manifestations of SLE, this area is still poorly understood. Falasinnu and colleagues1 at Stanford School of Medicine identified sex-based differences in the causes of death among SLE decedents in the United States and recognized clinically relevant comorbidities that may warrant careful consideration in patients’ clinical management. The study This study examined SLE-related deaths using the 2014 National Center for Health Statistics multiple cause of death (MCOD) database, a population-based electronic medical recording of all death certificates issued in the United States. The analysis considered not only the number of death certificates listing SLE as the underlying cause of death, but also those listing SLE in general. Demographic information considered included age, race/ethnicity, sex, educational attainment, foreign-born status, marital status, and pregnancy status. SLE decedents were compared with non-SLE decedents in the general population belonging to the same age group. The findings In 2014, there were 2,660,497 deaths in the United States, of which 2036 (0.1%) listed SLE among the causes of death. Approximately 86.2% of SLE deaths occurred among females, with a median age at death of 59 years and the highest proportion of deaths occurring between 45 and 64 years of age. In comparison, the overall median age at death for females in the general population was 81 years, and the majority of deaths occurred among females over 65 years of age. Black females experienced the greatest burden of SLE mortality. Approximately 32% of all female SLE decedents were black, compared with only 11% of non–SLE-related deaths in the general population. Female decedents with SLE had a slightly higher proportion of foreign-born individuals than the general population, but there were no other significant demographic differences. The most frequently listed comorbidities among female decedents with SLE were septicemia (4.32%) and hypertension (3.04%). Among male decedents with SLE, the median age at death was 61 years, compared with 73 years in the general population. Of male decedents with SLE, 23.5% were black, compared with only 12% in the general population. The age-standardized mortality was highest among American Indian males. There were no other demographic differences related to SLE among male decedents. The most frequently listed comorbidities among male decedents with SLE were heart disease (3.70%) and diabetes mellitus with complications (3.61%). Implications for physicians and future research This study offers an opportunity to better describe the association between SLE and related comorbidities in the context of mortality, although the MCOD data have a number of limitations. Inaccuracy on death certificates can lead to the underestimation of the SLE mortality burden, and researchers were unable to differentiate between causes of death that were related to the natural age process, disease activity, and drug therapy. Still, the MCOD data provide a comprehensive understanding of the population-based burden of SLE mortality. While female SLE patients tend to have more frequent disease exacerbations, male patients appear to have significantly greater multisystemic damage accrual and disease severity. Greater disease severity among male SLE patients may be related to under diagnosis due to selective attention given to females by physicians during clinical decision-making. This potential for gender bias needs to be carefully considered. Racial minorities generally have a disproportionately higher burden of mortality. The scope and degree of these differences in SLE are particularly pronounced, with mortality rates among black females nearly four times as high as those in white females. “Our findings reinforce the urgent need for interventions that reduce morbidity and mortality in patients with SLE to improve health outcomes and ultimately reduce health disparities,” the researchers write. They note that novel translational research programs are currently underway to attempt to address these disparities. Clinically relevant comorbidities also need to be considered more carefully in the course of patients’ clinical management and the natural history of SLE. This study revealed future targets for the investigation of sex-based differences and directions for epidemiological research. “A comprehensive understanding of causes of death and the related comorbidities can improve clinical diagnostic and therapeutic strategies, impact survival outcomes in patients living with SLE, and enhance population-based disease surveillance estimates,” the researchers conclude. References: 1. Falasinnu T, Chaichian Y, Simard JF. Impact of sex on systemic lupus erythematosus-related causes of premature mortality in the United States. J Womens Health (Larchmt). 2017;26:1214-1221. doi: 10.1089/jwh.2017.6334.
  9. Treatment Target Shows Promise in Systemic Lupus Erythematosus Mariah Zebrowski Leach, JD, MS Monday, December 4, 2017 The lupus low disease activity state (LLDAS) is a promising treatment target in systemic lupus erythematosus (SLE), according to new research. Background Successfully applied in rheumatoid arthritis as well as in non-rheumatic conditions, a treat-to-target approach aims to improve disease outcomes through the achievement of a pre-specified goal. An international task force suggested such a strategy for the treatment of SLE.1 They recommended that the treatment target should be remission or—when that is unachievable—the lowest possible disease activity. LLDAS is a composite definition of minimal acceptable disease activity proposed by the Asia-Pacific Lupus Collaboration (APLC). LLDAS is based on the following criteria: 1. SLE Disease Activity Index 2000 (SLEDAI-2K) ≤ 4, with no activity in major organ systems 2. No new lupus disease activity compared with the previous assessment 3. Safety of Estrogen in Lupus Erythematosus National Assessment (SELENA)-SLEDAI physician global assessment (PGA) ≤ 1 4. Current prednisolone (or equivalent) dose ≤ 7.5 mg daily 5. Well-tolerated standard maintenance doses of immunosuppressive drugs and approved biological agents To be considered a valid treatment target, LLDAS should be protective against damage accrual in the early SLE stages. Piga and colleagues2 at the University Clinic and AOU of Cagliari in Italy sought to determine the frequency of LLDAS achievement and its association with early damage accrual in a homogenous cohort of Caucasian patients with SLE prospectively assessed during the first 18 months of treatment after diagnosis. The study This study primarily aimed to assess the frequency of LLDAS achievement and its association with early damage, with a secondary aim to identify the main reasons for failure to achieve LLDAS. The study cohort consisted of 107 patients from the Cagliari (Italy) SLE cohort between January 2006 and December 2016. To assess LLDAS as a goal for initial treatment, the primary study endpoint was set at 6 months, with 18 months considered an appropriate time to evaluate the effect of maintenance treatment and early damage accrual. At each visit, disease activity was assessed using the SLEDAI-2K score and the PGA. At 18 months, damage accrual was assessed by the SDI and the possible attribution to corticosteroids was done according to a previous definition. Average daily dose of prednisolone (or equivalent) and ongoing use and new prescription of medications were assessed at every visit. The findings At the 6-month point, LLDAS had been achieved by 47 patients (43.9%). At 18 months, 48 patients (44.9%) were in LLDAS; 33 of them had achieved LLDAS at 6 months and were still in this condition and 15 had reached LLDAS for the first time. Of the 59 patients who were not in LLDAS at 18 months, 45 had never been in LLDAS and 14 had been in LLDAS at 6 months but no longer were at 18 months. Thus, despite a seemingly overall stable LLDAS rate, these results demonstrate the dynamic nature of this condition. On univariate analysis, the following factors were significantly associated with failure to achieve LLDAS at 6 months: renal involvement, higher SLEDAI-2K score, positive (> 10 UL/mL) anti-dsDNA antibodies, lower serum C3 and C4 values, and higher prednisolone dose and immunosuppressant drug use. On multivariate analysis, renal involvement and C4 levels were confirmed to be associated with failure to achieve LLDAS. Implications for physicians The limitations of this study are the relatively small sample size, which may have hampered study results, and the retrospective design, which prevented researchers from testing LLDAS criterion validity by comparing it with other treatment targets such as the SLE Responder Index. Nevertheless, by enrolling consecutively diagnosed patients at the time of treatment initiation and following them prospectively, the researchers were able to provide novel data on LLDAS as a potential treatment target. In this study, the most frequent reason for failure to achieve LLDAS 6 months after therapy initiation was daily prednisolone dosage > 7.5 mg. Damage was definitely attributable to steroid use in 40% of cases in this cohort. However, supported by this data and literature evidence on damage development, the researchers consider 7.5 mg/d an acceptable cutoff to define low disease activity during initial treatment. Still, they recommend a lower cutoff should be targeted to minimize risk of steroid-related damage during maintenance therapy in patients with SLE. In this cohort, patients with renal involvement and serological disorders had the lowest remission rate, and renal involvement at baseline was the most important factor associated with failure to achieve LLDAS. “LLDAS is a promising treatment target in SLE, being attainable and negatively associated with damage accrual in the early stages of the disease,” the researchers write. “However, it seems to poorly fit with the heterogeneity of clinical presentation in patients with SLE, mostly in those with renal involvement,” they conclude. References: 1. van Vollenhoven R, Voskuyl A, Bertsias G, et al. Treat-to-target in systemic lupus erythematosus: recommendations from an international task force. Ann Rheum Dis. 2014;73:958-967. 2. Piga M, Floris A, Cappellazzo G, et al. Failure to achieve lupus low disease activity state (LLDAS) six months after diagnosis is associated with early damage accrual in Caucasian patients with systemic lupus erythematosus. Arthritis Res Ther. 2017;19:247. doi: 10.1186/s13075-017-1451-5.
  10. Poverty Stacks the Deck Against Patients With Lupus Gregory M. Weiss, M.D. Tuesday, November 28, 2017 Lupus Poor patients with systemic lupus erythematosus (SLE) who receive Medicaid are less likely to adhere to their treatment regimen than are patients who live in more affluent areas. Adherence to SLE therapy may also be lower in areas with large African American populations and limited access to health care professionals. In addition, Medicaid patients are less likely to take hydroxychloroquine for lupus if they live in areas with fewer hospitals, high African American populations, and low provider numbers. SLE strikes women with greater frequency than men and is more than twice as common in the African American population. Dr. Candace Feldman and colleagues at Harvard Medical School note that compliance with hydroxychloroquine therapy in lupus patients is poor at baseline. “Studies in other chronic diseases demonstrate that where individuals live has a significant effect on their health-related behaviors and on disease control and outcomes,” said Dr. Feldman. It was this premise that led the authors to look into how location and resources contribute to adherence to treatment in SLE. They presented their findings at the recent American College of Rheumatologyannual meeting in San Diego, California. The study Utilizing the Medicaid database, new users of hydroxychloroquine were identified and adherence was measured over a 12-month period. The study included 10,268 subjects with SLE who were new users of hydroxychloroquine. The results • Only 15% of subjects remained adherent to hydroxychloroquine therapy based on taking the drug on 80% or more of days covered. • Zip codes with higher percentages of African American residents had lower odds of adherence. • Adherence was highest in counties with more hospitals and lowest in areas with low numbers of health care professionals. • Living in areas with higher numbers of African Americans and fewer hospitals and health care professionals independently predicted low adherence to hydroxychloroquine therapy. Implications for physicians • Low adherence to hydroxychloroquine therapy in SLE is widespread among Medicaid recipients. • Patients with SLE in predominantly low-income, African American communities are at higher risk for non-compliance to hydroxychloroquine therapy. • Lack of access to health care providers and hospitals reduces the likelihood that patients with lupus will adhere to therapy. • Physicians should make every effort to identify barriers to care and treatment adherence, especially in low-income patients with lupus who live in isolated communities with large minority populations. References: American College of Rheumatology Press Release. “Diversity Rate and Poor Access to Health Professionals May Influence Lupus Therapy Adherence.” November 4, 2017. ACR/ARHP Annual Meeting. San Diego, California.
  11. An evidence-based approach to pre-pregnancy counselling for patients with systemic lupus Y K Onno Teng Edwin O W Bredewold Ton J Rabelink Tom W J HuizingaH C Jeroen Eikenboom Maarten Limper Ruth D E Fritsch-StorkKitty W M Bloemenkamp Marieke Sueters Rheumatology, kex374, https://doi.org/10.1093/rheumatology/kex374 Published: 20 November 2017 Abstract Patients with SLE are often young females of childbearing age and a pregnancy wish in this patient group is common. However, SLE patients are at high risk for adverse pregnancy outcomes that require adequate guidance. It is widely acknowledged that pre-pregnancy counselling is the pivotal first step in the management of SLE patients with a wish to become pregnant. Next, management of these patients is usually multidisciplinary and often requires specific expertise from the different physicians involved. Very recently a EULAR recommendation was published emphasizing the need for adequate preconception counselling and risk stratification. Therefore the present review specifically addresses the issue of pre-pregnancy counselling for SLE patients with an evidence-based approach. The review summarizes data retrieved from recently published, high-quality cohort studies that have contributed to a better understanding and estimation of pregnancy-related risks for SLE patients. The present review categorizes risks from a patient-oriented point of view, that is, the influence of pregnancy on SLE, of SLE on pregnancy, of SLE on the foetus/neonate and of SLE-related medication. Lastly, pre-pregnancy counselling of SLE patients with additional secondary APS is reviewed. Collectively these data can guide clinicians to formulate appropriate preventive strategies and patient-tailored monitoring plans during pre-pregnancy counselling of SLE patients. https://academic.oup.com/rheumatology/advance-article-abstract/doi/10.1093/rheumatology/kex374/4641853?redirectedFrom=fulltext
  12. 21 November, 2017 SAN DIEGO — At the American College of Rheumatology Annual Meeting, Joan Merrill, MD, spoke about a study that she said is further demonstration that atacicept should continue being developed as a potential treatment for lupus. According to Merrill, the results also suggest that measurements of low-disease activity may represent not just clinically meaningful endpoints, but may also “work as endpoints in clinical trials to discriminate drug from placebo.” https://www.healio.com/rheumatology/lupus/news/online/{1b289264-6a9b-47a3-86c6-9b0eb8a3980f}/video-atacicept-is-a-potential-exciting-treatment-for-lupus?utm_source=selligent&utm_medium=email&utm_campaign=rheumatology news&m_bt=1879111151405
  13. Obesity linked to worse outcomes of pain, fatigue, depression in women with lupus November 13, 2017 SAN DIEGO — Among women with systemic lupus erythematosus, obesity appears to be independently linked to worse patient-reported outcomes, suggesting that weight loss may improve outcomes for this population, according to findings presented at the American College of Rheumatology Annual Meeting. “The research that I am presenting at this conference was inspired by previous work that showed that patients with lupus experienced big deferments in patient-reported outcomes, or PROs,” Sarah L. Patterson, MD, a fellow in rheumatology at the University of California, San Francisco, and an author of the study, said in her presentation. “It's also been noted that these deferments in PROs are not fully explained by the severity of their lupus disease or by sociodemographic factors such as poverty. So, we therefore wanted to know whether body composition and, specifically, excess adipose tissue contributes to the worse health-related quality of life and greater symptom burden that we see in this particular patient population.” In the study, Patterson and colleagues identified a sample of 148 patients with SLE (65% white, 14% Asian and 13% African-American; mean age, 48 ± 12.3 years) from the Arthritis Body Composition and Disability (ABCD) study. Eligible participants were women aged at least 18 years who had a diagnosis of SLE that could be corroborated by medical record review. The researchers calculated BMI and fat mass index (FMI). FMI measures total fat mass adjusted for height and was evaluated in the study using whole dual-energy X-ray absorptiometry. Obesity was defined using two designations: FMI of at least 13 kg/m2 and BMI of at least 30 kg/m2. The following four validated patient-reported outcomes were included as dependent variables: disease activity via Systemic Lupus Activity Questionnaire, depressive symptoms via Center for Epidemiologic Studies Depression Scale, pain assessed by SF-36 pain subscale and fatigue measured by SF-36 vitality subscale. Multivariable linear regression was used to analyze correlations of obesity with patient-reported outcomes , adjusted for possible confounding factor (age, race, education, income, smoking status, disease duration, disease damage and prednisone use). Adjusted means for each outcome were then calculated based on the multivariable regression. Of the patients in the sample, 17% had poverty-level income; 86% had education beyond high school; the mean duration of disease was 16 ± 9 years; and 45% were being treated with glucocorticoids. Based on the FMI definition of obesity, 32% of patients met the criteria for obesity, whereas 30% were deemed obese by the BMI definition. The multivariate regression model found that FMI-defined obesity was correlated with worse scores on each patient-reported outcome (greater disease activity, higher levels of depression, more pain and more fatigue). In the analyses that used the traditional BMI of at least 30 kg/m2 criteria, the same correlations were seen between obesity and each of the patient-reported outcomes. “These findings have important clinical implications. The PROs that we measured, particularly pain and fatigue, are known to have profound effects on quality of life, and remain a major area of unmet need in people with lupus,” Patterson said. “In other words, there are many patients with lupus who are treated with aggressive immunomodulatory therapy and these symptoms of pain and fatigue persist. The relationship that we observed between excess fat and worse outcomes really underscores the need for lifestyle interventions for lupus patients who are overweight.” – by Jennifer Byrne Reference: Patterson SL, et al. Abstract #2263. Presented at: American College of Rheumatology Annual Meeting; Nov. 4-8, 2017; San Diego. Disclosures: The authors report no relevant financial disclosures. https://www.healio.com/rheumatology/lupus/news/online/{88b88835-9c84-4880-a058-1e4d1d926aa6}/obesity-linked-to-worse-outcomes-of-pain-fatigue-depression-in-women-with-lupus?utm_source=selligent&utm_medium=email&utm_campaign=rheumatology news&m_bt=1879111151405
  14. Managing Infections for Lupus Patients - Highlights from Dr. Curran's Presentation On August 9, 2012, the LSI hosted an educational teleconference “Managing and Preventing Infections for Lupus Patients” presented by Dr. James Curran. The event included a presentation by Dr. Curran followed by Q&A from the callers. The article below is based on information obtained from the teleconference. The entire transcript will be available online in the next few weeks. The second leading cause of death in SLE is infection – making managing and preventing infections a top priority for lupus patients. Lupus patients are at greater risk for many reasons; most are on immunosuppressive therapy at one point or another, pathogen exposure at office visits and lupus itself causes a dysfunction of the normal immune response to name a few. Treatments may also contribute to the high infection rate. The new biologic medications (rituximab, orencia and Benlysta) can increase the risk of infection. Corticosteroids, including prednisone, increase the risk of infection. The higher the dose of corticosteroids you’re on, the longer you’re on the dose, the greater the risk of infection. The incidence of infections in lupus patients – especially life-threatening infections – appears to be highest in the first five years of the disease. One reason for this might be that in the first five years, patients are undergoing treatment that is modifying their immune response. Infections lupus patients should be mindful of include bacterial, viral and fungal. Some common threats to lupus are pneumococcal pneumonia or streptococcus pneumonia, Haemophilus influenza and staphylococcus aureus. Lupus patients have a predilection towards salmonella which in lupus patients frequently causes osteomyelitis or bone infections. Shingles is more common in lupus patients than the general public. Yeast infections are also common in lupus patients. Other non-hospitalized infections include respiratory tract infection, sinusitis, urinary tract infections and skin infections. Usually with aggressive treatment and early diagnosis, these infections do not require hospitalization. What can you do to protect yourself again getting an infection? First, non-live vaccines are recommended. That would include the flu shot (NOT the flu vaccine administered through the nasal passages), Pneumococcal vaccine every 5-10 years, a Bordetella pertussis booster, Hepatitis B (for healthcare workers) and meningococcal to name a few. If you are on a biologic, be aware that the biologic medicine may impair the normal response to a vaccine. If you have lupus, you should be vaccinated before you use any biologic and before taking major immunosuppressant medications. Plaquenil, hydroxychloroquine, decreases the risk of infections. A 2009 study showed that individuals on Plaquenil are 16 times less likely to get a major infection when taking the drug – regardless of whether or not corticosteroids are also taken. So, patients on corticosteroids and Plaquenil had fewer infections than patients on steroids alone. Other things you can do to manage infections are to be sure to get treated with antibiotics if you are sick. Be sure to use bactericidal drugs – drugs that kill the bacteria instead of freeze it. Lupus patient’s immune system needs to kill the bacteria. In conclusion, remember vaccinations are very important – avoid live viruses. Plaquenil reduces risk of infection. Limit your exposure to infection.
  15. Lupus Survival Much Improved, But Plateaued September 25, 2017 | Lupus By Gregory M. Weiss, M.D. Survival rates for patients with systemic lupus erythematosus have plateaued since the middle of the 1990s after a period of major improvement starting in the 1950s. It has been thought that survival in systemic lupus erythematosus has continued to improve over the years, with reports of survival in adults increasing from 50% in the 1950s to more than 95% in the 1990s. Data with regard to survival trends in low- and middle-income countries and at 10- and 15-year periods are limited, so Maria Tektonidou and fellow researchers in Greece sought to describe mortality trends for children and adults with systemic lupus erythematosus and presented their findings in a recent Annals of the Rheumatic Diseases article. The study The authors performed a systematic review of the literature, looking at children and adults with systemic lupus erythematosus. Ultimately included in the final analysis were 171 studies; 125 looked at adult survival rates, 51 at pediatric survival, and 5 at both. Results • Studies in high-income countries showed a steady increase in survival from the middle of the 1950s to 1990. Survival rates have remained stable since then. • Five-year survival in high-income countries is greater than 95% in both adults and children who have systemic lupus erythematosus. • Five- and 10 year survival was lower for children than adults in low- to middle-income countries. Adults • Survival in adults with systemic lupus erythematosus has not continued to improve through the 2000s. • From 2008 to 2016, survival rates for adults with systemic lupus erythematosus in high-income countries at 5, 10, and 15 years were 0.95, 0.89, and 0.82, respectively (95% confidence intervals [CIs], 0.94-0.96, 0.88-0.90, and 0.81-0.83, respectively). • From 2008 to 2016, survival rates for adults with systemic lupus erythematosus in low- to middle-income countries at 5, 10, and 15 years were 0.92, 0.85, and 0.79, respectively (95% CIs, 0.91-0.93, 0.84-0.87, and 0.78-0.81, respectively). Children • From 2008 to 2016, survival rates for children with systemic lupus erythematosus in high-income countries at 5 and 10 years were 0.99 and 0.97, respectively (95% CIs, 0.98-1.0 and 0.96-0.98, respectively). • From 1980 to 2000, survival rates for children with systemic lupus erythematosus in low- to middle-income countries at 5 and 10 years were 0.85 and 0.79, respectively (95% CIs, 0.83-0.88 and 0.76-0.82, respectively). • Listing of systemic lupus erythematosus as the cause of death in all cohorts decreased over time. Implications for physicians • Although survival in adults and children with systemic lupus erythematosus both in high-income and in low/middle-income countries has improved dramatically since the 1950s, further gains have not been realized in the 2000s. • A decreased frequency of deaths attributed to systemic lupus erythematosus may be the result of new immunosuppressive drugs and combination therapies. • No increase in death resulting from cardiovascular events or cancer was seen in adults with systemic lupus erythematosus. • The authors suggested that strides need to be made in determining why survival rates are lower in children than in adults in low- and middle-income countries. http://www.rheumatologynetwork.com/lupus/lupus-survival-much-improved-plateaued?GUID=&rememberme=1&ts=26092017
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