There are many unanswered questions about life with Bohring-Opitz Syndrome (ASXL1), Shashi-Pena Syndrome (ASXL2), and Bainbridge-Ropers Syndrome (ASXL3). We are still working to find treatments that can improve the quality of life for affected individuals and their families. Participation in research studies is vital to providing crucial answers and driving innovation in treatment. Researchers can’t do it alone—they need your help in understanding these rare diseases.
This guide offers an overview of how to participate in research studies, including how to find and enroll in a study, the requirements for enrollment, and the process that follows participation.
Published: July 2024
Financial support for developing and producing this guide was made possible by the American Legion Child Well-Being Foundation.
The information presented here is for educational purposes only. This information is not medical advice and should not be treated as such. You should always talk to your or your family member’s health care professionals for diagnosis and treatment, including information regarding which drugs or treatment may be appropriate for you or your family member. We do not represent or warrant that any particular treatment is safe, appropriate or effective for you or your family member. In the event of a medical emergency, you should contact your doctor immediately or call your local emergency service.
