FSR believes patients are at the center of research and progress.

FSR encourages patients to participate in the FSR patient registry, clinical trials, research surveys and academic studies to help us advance towards a cure.

FSR is proud to help connect patients meaningful research opportunities, like academic and industry-sponsored clinical trials.

Clinical trials are critical to the process of developing new treatments and therapies. Even when a trial is not successful, it can help to reveal critical information to deepen our understanding of the disease, its cause, and other treatment options.  Before a patient decides to participate in a study, they should carefully weigh any risks against possible benefits.  Whenever considering participation in a clinical trial, you should speak with your doctor.

Potential Benefits

Although patients may not always receive a direct benefit from a trial, those who participate in trials appreciate the opportunity to meet more frequently with sarcoidosis experts, may receive additional information or testing not available through standard care, and play a pivotal role in advancing knowledge and understanding of the disease.

• Patients may or may not receive direct benefit for their condition as a result of participating in clinical research.
• The knowledge learned by researchers may help others.

Potential Risks

Similar to routine medical care, there are potential risks involved with participating in clinical research. Some of these risks may include unpleasant, serious, or even life-threatening side effect to experimental treatment. The potential risks will vary between clinical studies, but all risks should be described in detail in a written consent document and should be explained to you by a member of the research team.  Patients should carefully weigh these risks against possible benefits. Patients should not be afraid to ask questions when reviewing all the details of their participation in clinical trials.

Before Participating in a Study

Here are some questions to ask the research study team to help you decide whether to participate in a trial

• What is the purpose of the trial?
• Who is conducting the trial?
• How long will the trial last?
• How might participation affect daily life?
• Which tests and investigational treatments are involved?
• How do the possible risks, side effects, and benefits compare with current treatment?
• Who will pay for the investigational treatment and other related expenses?
• What type of long-term follow up care is part of this trial?
• What is the patient’s role in participating in this clinical trial?

Understanding Clinical Trial Keywords

• placebo: an inactive pill, liquid or powder that has no treatment value. In clinical trials, investigational treatments are often compared to placebos to assess the effectiveness of the investigational treatment.
• double-blind study: a clinical trial design in which neither the participants nor the study staff knows who receives the investigational drug or the placebo, to produce objective results and avoid bias.
• randomized trial: participants are randomly (by chance) assigned to one of two or more treatment arms of a clinical trial. One treatment arm may receive a placebo.
• controlled trial: a control is a standard against which experimental observations may be evaluated. In clinical trials, one group of participants is given an investigational drug, while another group (the control group) is given either a standard treatment or a placebo.
• observational study: participants are observed, or certain outcomes are measured but no treatment is given.