Lupus Research Action Network Members
Thank you for being a member of the Lupus Research Action Network and for your commitment to improving the lives of people with lupus by promoting opportunities to participate in lupus research. Use this page to stay up-to-date on the latest lupus research news and to download critical resources that will assist you as we support and enhance lupus research. This page will be updated as new resources become available, so check back often!
The Lupus Research Action Network (LRAN) is designed to empower select members of the lupus community to educate other Lupus Warriors about lupus research, including clinical trials, and drive participation in it. Members of the Lupus Research Action Network are a critical component of the Foundation's mission to advance research through advocacy, awareness and education.
The documents below are exclusive to LRAN members and password protected. The password is the same for all documents and was included in the email from Stephanie Slan sent on September 15.
September 13, 2022: Day 1
September 14, 2022: Day 2
General Resources
Search for Clinical Trials – this page will allow someone to use our specially-designed tool by Antidote to search for trials near them in just 60 seconds. The page also provides links to other sites where trials can be searched for, including ClinicalTrials.gov.
Frequently asked questions about participating in clinical trials – this page answers questions from the very basics, like what is a clinical trial, all the way up to more advanced questions about informed consent, adverse reactions, and much more. This page will also be a good reference for you as you answer questions from others and prepare for presentations you may be giving. If preferred, a shorter version of these FAQs exists as a PDF.
Addressing the legacy of distrust in clinical trials – as we discussed during the training, many people are distrustful of medical research for good reason. This article addresses some of the reasons for that distrust and discusses how trials have evolved over time to prevent the horrors of the past and put the safety and well-being of patients at the forefront of every trial.
The Expert Series
The Expert Series is an educational podcast series by the Lupus Foundation of America which features leading lupus experts with a focus on helping you live well with lupus and several episodes focused on clinical trials.
Clinical Trials and Lupus – in this episode, listeners will learn the basics of research, including the different types, what to consider before agreeing to participate in a trial, and associated costs.
Trust and Participation in Research – in this episode, listeners will learn more information about precision medicine, the importance of diversity in clinical trials and what participation in a clinical trial entails.
Additional Resources
You've Got the Power! – general information by the National Medical Association about African Americans & clinical trials.
Patient Bill of Rights – learn about a participant's rights before, during, and after a clinical trial.
African Americans and Clinical Research – these guide provides general information about clinical research and why it is so important that African Americans participate in it.
What is Happening to My Body? Lupus and African Americans – general information about lupus in African Americans that includes details on the types of lupus, diagnosis, and living well with the disease.
You Can Make a Difference: Lupus Clinical Trials and African Americans – a printable document that includes many of the same FAQs from above but is written for the African American audience and addresses specific concerns that exist among the black community.
Helpful Resources for Lupus and Clinical Trials – printable document providing links to Foundation content and resources, including our Health Educator Network, RAY: Research Accelerated by You, and more.
RAY: Research Accelerated by You – this landing page includes all of the information about the platform, including the link to join. In general, if someone does want to join RAY, it would be best to point them here so they can read the additional background before moving to this page where they actually begin the process of registering and enrolling in RAY.
RAY Infographic – provides an easy-to-digest but comprehensive overview of what we have already learned from RAY, including the demographics of those currently enrolled, their diagnosis and treatment experience, main symptoms, and more.
RAY Promotional Video – short overview of the platform and how it can be useful to people with lupus and researchers alike.
If you or anyone else has questions about RAY, please send an email to RegistryCoordinator@lupus.org.
Resources for Your Patients – this page includes a comprehensive list of resources that health care professionals could make available for their patients dealing with lupus. It's also a good resource for you if you are looking to provide information to someone living with or caring for someone with lupus.
5 Ways Nurses Can Increase Diversity in Lupus Clinical Trials – health care professionals play a critical role in connecting their patients with clinical trials. This article details five actionable ways nurses can talk with their patients about clinical trials and encourage them to participate.
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The Lupus Foundation of America works with partners to provide ways to participate in clinical trials near you. There are several ways to find clinical trials, including a quick search function provided by Antidote.
Many people assume that the only way to support lupus research is by participating in a clinical trial, which as we discussed, is not the case at all. Clinical trials are one part of the research ecosystem, but for those uninterested or unable to participate in a trial, here are other ways they can support research.
RAY: Research Accelerated by You is a lupus data platform where people with lupus and caregivers share information about their lupus experience to help researchers accelerate the development of new treatments and improve disease outcomes.
The federal government is one of the most significant sources of funding for lupus research. As part of our comprehensive research strategy, we advocate for increased funding for all federal agencies involved in lupus to fund more lupus studies. Your voice can help!
