This study enrollment has closed. Thank you to all the families who participated! Details will be available regarding the outcome once the data has been published.

The UVA Health System Department of Asthma, Allergy, and Immunology seeks parents/caregivers of patients diagnosed with Pitt-Hopkins Syndrome for a research study.

The purpose of the research study is to learn more about digestive symptoms experienced by patients with Pitt-Hopkins Syndrome. The study involves completing a brief, 15–20 minute survey. It asks questions about the digestive symptoms your child experiences, other conditions, have, and procedures they may have undergone. No compensation is provided for this study; however, information researchers get from this study may help others in the future.

To complete the survey, click HERE

For more information please contact:

Study Coordinator: Rebecca Revell, CRC

University of Virginia, Asthma, Allergy, and Immunology

409 Lane Road, MR4. Room 5031.

Charlottesville, VA 22908

Telephone: 434-243-8635 Email: GWQ8WH@uvahealth.org

Principal Investigator:  Emily McGowan, MD, PhD