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. 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 are critical to advancing medical research in sarcoidosis.

Potential Benefits

  • Free medical care & laboratory studies.
  • Receive treatments before they are offered to others.
  • May or may not receive direct benefit for yourself and your condition as a result of participating in research, however, you will know that the knowledge learned by researchers may help others.

Know the Risks

  • Some risks are involved in clinical research, just as in routine medical care and activities of daily living. These may include unpleasant, serious or even life-threatening side effects to experimental treatment or the experimental treatment may not be effective.
  • Risks associated with any research study should be described in detail in a written consent document and by a member of the research team.
  • Carefully weigh these risks against possible benefits.

Before Participating in a Study

You should know as much as possible about the study and feel comfortable asking the members of the health care team questions about it, the care expected while in a trial and the cost of the trial.

  • The purpose of the study.
  • Who is conducting the study.
  • How long the study will last and how participation might affect your daily life.
  • The kinds of tests and experimental treatments involved.
  • How the possible risks, side effects and benefits compare with your current treatment.
  • Who will pay for the experimental treatment and other related expenses.
  • What type of long-term follow up care is part of this study.

Understanding Clinical Trial Keywords

  • placebo: an inactive pill, liquid or powder that has no treatment value. In clinical trials, experimental treatments are often compared with placebos to assess the effectiveness.
  • double-blind study: a clinical trial design in which neither the participants nor the study staff knows who receives the experimental drug or the placebo, to produce objective results.
  • randomized trial: participants are randomly (by chance) assigned to one of two or more treatment arms of a clinical trial, some 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 experimental 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.