Clinical Trial Opportunities:
The Autoimmune Registry helps to support a number of clinical trials. Clinical trials are required by the FDA and other regulatory bodies before new treatments are allowed onto the market. Because of this, patient participation in clinical trials is essential for the release of new treatments. The Autoimmune Registry supports this effort by recruiting from our registry and guiding our participants through the trial using Patient Navigators, who are autoimmune disease patients themselves and who are available to answer questions and offer moral support.
Warm Autoimmune Hemolytic Anemia - The SApHiAre study is looking for participants with wAIHA. Study doctors are evaluating an investigational medication given as an injection under the skin to determine its safety and efficacy in patients with wAIHA. In this study, if you are eligible, you will be seen by wAIHA medical specialists and may receive the investigational medication which is being evaluated to see if it helps to improve anemia caused by wAIHA.
IgG4-Related Diseases - For patients with a confirmed diagnosis of IgG4-related disease, a clinical study is now available, and you can find out if this study may be right for you. The purpose of this study is to evaluate a new potential treatment of IgG4-RD in adult individuals with IgG4-RD to see if it prevents flares associated with the condition.
Dermatomyositis - we are recruiting patients between the ages of 18 and 75 with a diagnosis of dermatomyositis to test a new pill aimed at reducing the symptom burden of the disease. Learn more here.
Messages from our Patient Navigators:
“As someone with dermatomyositis, I want to do as much as I can to help make new treatments available to other patients. For many rare diseases like dermatomyositis, treatment is limited because it is so difficult to recruit patients for clinical trials, which are required for FDA approval of drugs. By serving as a Patient Navigator, I hope to guide patients who participate in clinical trials, represent their perspectives, and make the process as easy as I can for them.”
“As a patient with warm autoimmune hemolytic anemia, I struggled with thinking I was so alone and the only one with this rare disease. I would like to help other patients through this rare disease by helping to make new treatments available. In order for new treatments to be approved by the FDA or insurance, they have to show effectiveness in clinical trials. For many rare diseases like warm autoimmune hemolytic anemia, treatment is limited because it is so difficult to recruit patients for these trials. As a Patient Navigator, I hope to guide patients who participate in clinical trials and make the process as comfortable, stress free and reassuring as possible by sharing my experience and by giving emotional support when needed. This wAIHA is rare but if we stick together and support each other, we can overcome it and become strong and healthy again.”
“I am often asked ‘Why do you volunteer to help drug companies?’ I suffer from Scleroderma, a rare disease that’s been around for a long time. The drugs that help me could not have been developed without the work of scientists at academic research organizations and with the help of many patients who volunteered to participate in the clinical trials needed to prove that the drugs actually work.
So why do I volunteer? To help all of the patients that come after me to live longer, more fulfilling lives. It's the least I can do to honor those that did the same thing for me, and by doing so, made my journey longer and more bearable.”
To be contacted for future trials that you may be eligible for, please join the registry below.
