Research – 4P Support Group

Patient Registry

A patient registry is an online database that stores important information in a systematic way and can be queried into data reports.

Current Research Studies

You can help us to better understand seizure treatments for children with WHS by completing a simple questionnaire to gather information about seizure history and management in WHS.

American Journal of Medical Genetics Articles

Parent-authored memoirs: Lessons in the practice of narrative medicine

Natural history study of adults with Wolf–Hirschhorn syndrome 1: Case series of personally observed 35 individuals

Natural history study of adults with Wolf–Hirschhorn syndrome 2: Patient-reported outcomes study

International meeting on Wolf-Hirschhorn syndrome: Update on the nosology and new insights on the pathogenic mechanisms for seizures and growth delay

The delineation of the Wolf-Hirschhorn syndrome over six decades: Illustration of the ongoing advances in phenotype analysis and cytogenomic technology