Why is your participation important?
Every patient can play an important part in helping to find an effective treatment and cure for Angelman, Rett and Prader-Willi Syndromes. One very important way you can help is by joining the Patient Contact Registry,
and possibly taking part in a clinical trial.
Who Can Join the Contact Registry?
Anyone who is diagnosed with Angelman syndrome, Rett syndrome, or Prader-Willi syndrome can join the contact registry.
How does the Contact Registry Work?
After you have read and agreed to the Authorization, the Registry form will appear on your screen. This form asks you for information such as your (or your child's) name, address, birth date, place of birth, email address, or items relevant to your (or your child's) disorders.
Once you have entered and submitted this information online, the data will be stored in a secure, computerized database. No personal identifying information (such as your name, address, telephone number) will be given to anyone without your expressed approval.
The Rare Diseases Clinical Research Network will make every effort to enroll all the patients we can, but we cannot make any guarantees that we will be able to enroll everyone in a particular study who wants to participate.