FSR believes patients are KEY to the progress of research — their physical being and their own specific experiences of living with sarcoidosis are invaluable for medical advances.
In short, a sarcoidosis patient is a living lab which is absolutely critical to researchers. FSR encourages patients to participate in the patient registry, clinical trials, and data-sharing opportunities to fuel this fight toward a cure.
Connecting patients to research is a priority for FSR. The Clinical Trial Interest Indicator (CTII) is a basic “contact list” system designed to connect patients with clinical trials. Its purpose is to build a list of patients who would be interested in MORE INFORMATION about potential clinical trials. FSR will communicate with those who sign up onto CTII about clinical trial opportunities, news etc. We will also share with researchers basic geographical information about where the interested people live so they might be able to consider setting up clinical trials in those areas.
PLEASE NOTE: CTII is NOT an actual clinical trial enrollment! It is a tool that will allow for identifying patients who would like to be contacted for specific trials. The clinical trial enrollment process for any actual trial will happen through the clinic and/or researchers conducting those trials, and these usually have very specific requirements for patients.
Clinical Trials (sometimes called studies or protocols) are medical research studies in which people participate as volunteers and are one way of developing new treatments and medications for diseases like sarcoidosis. Clinical studies can also provide researchers information that may be an important first step toward developing a treatment. For example, research may show how the disease progresses or how it affects other systems in the body. Before deciding to participate in a study, you should carefully weigh any risks against possible benefits. Patients involvement in clinical trials is critical to advancing medical research in sarcoidosis.