Title: Foundation for Sarcoidosis Research Advanced Cures Registry (FSR-SARC Registry)

Purpose and why you’re being asked to take part

We are asking you to participate in the Foundation for Sarcoidosis Research Advanced Cures Registry or the FSR SARC Registry because you have a disease called juvenile sarcoidosis or Blau Syndrome. This is a rare condition that causes lumps of cells called granulomas in different parts of your body. It may cause you to have skin rashes, pain and swelling in your joints (feet, ankles, knees or hands), and difficulty seeing. It can affect any part of the body and can cause problems depending on where the granulomas are. Not everyone who has sarcoidosis has the same kind of problems.

Doctors are trying to learn more about your illness. They are trying to find out how many children have it and the best way to treat it. We are asking you to be a part of the FSR SARC Registry so they can learn more about this disease in children and adults.

What is involved in being a part of the Registry?

If you agree to be in the FSR SARC Registry, your parent or legal guardian will set up an account on-line at our website (fsr-sarc.org) with a username and a password. They (with your help) will answer questions about your illness such as when and how you were diagnosed, what kinds of doctors you saw, your treatments and how it affects you in your life. We will ask you where in your body you have the disease and how many times you have needed to be in the hospital. We will ask your parent to add information on the website once a year or if you start a new treatment or another part of your body becomes involved.

All of the information about your illness that is in the computer will be given a special code (numbers and letters) so that no one will know who you are. Anyone who looks at the information will not be able to tell that it has come from you. Scientists and doctors will look at this information to try to learn more about your disease and patients like you. They will also be able to plan new studies for patients to learn more about what causes Sarcoid or how to better treat it.

What are the Risks of taking part in the Registry?

There is a small risk that some of the questions you are asked might make you feel uncomfortable. You may decide to refuse to answer these questions. There is also a very small chance that you might be able to be identified although we will do everything we can so that this will not happen. 

Are there any Benefits to taking part in the Registry?

A benefit means that something good happens to you. The main benefit of being in the Registry is that your information may help doctors learn about children and adults with your disease. It may help them to plan new studies for new treatments. If you have agreed that you want to be told about any new study, we will contact you and your parents or legal guardian and tell you about these studies. The doctors in the new study would then decide with you and your parents if you could join the new study.  

Do I have to be in the Registry?

You do not have to be in the FSR SARC Registry if you do not want to be. It is voluntary. You do not need to have any extra tests or visits to your doctor. It will not affect the care that you get from the doctors who are treating your sarcoidosis. You can also decide to stop being in the Registry at any time.

Please ask your parents and the doctors and nurses caring for you if you have any questions about being in the Registry or if there is anything you do not understand.

We plan on keeping the Registry and the information in it for as long as we can. We hope to continue to add new patients and their information to it. If you have decided to add your information to this Registry, when you are 18 years old we will ask you to sign the same on-line consent form that your parents or legal guardian sign to say that you agree to participate.