A clinical trial or research study is generally considered to be a health-related research study in people that follows a pre-defined written protocol, which may or may not involve testing a medication. REVEAL-CP is a screening study. This means that no medications or treatments are being offered.
WHAT ARE THE POTENTIAL BENEFITS OF PARTICIPATING?
If you or your child participates, you will learn whether or not you have AADC deficiency. We expect that only a small percentage of those taking part in this study will have AADC deficiency.
PTC Therapeutics, Inc., the company sponsoring this study, hopes to learn more about both AADC deficiency symptoms and conditions that present like AADC deficiency.
There is no cure for AADC deficiency. However, there are some medicines that doctors use to help treat the symptoms of AADC deficiency.
Voluntary Participation and Informed Consent
Participation in a research study is completely voluntary. In all research studies, potential participants (and parents/guardians, if applicable) are first informed about the research study in detail. After receiving this information, all participants or their parent/guardian must give their consent in writing to proceed.
Participants can withdraw (themselves or their child) from this study at any time and by any means. This will not affect their /their child's medical care in any way.
ARE THERE ANY RISKS TO PARTICIPATING IN THIS RESEARCH STUDY?