Would you like to get involved in research now?   There are many ways to get involved now in research and to help create a better understanding of Pitt Hopkins Syndrome for research, diagnosis and symptomatic treatment options.

  • Surveys help us to document detailed information about our children that can be used in future research and symptomatic treatment options.
  • Clinic settings bring PTHS patients to a dedicated clinic and will focus on providing knowledge-based medical care and serving the comprehensive medical needs of individuals with Pitt Hopkins Syndrome.
  • Skin samples/sample repositories help support current or future research and allow samples to be more easily accessible for research organizations.
  • Other studies – such as the facial recognition study may provide valuable information to help diagnose others with Pitt Hopkins Syndrome.

Ways to get involved

Click on links for a detailed description and information on how to participate:

  1. Baylor College of Medicine Pitt Hopkins Study
  2. Pitt Hopkins Questionnaire–Prof. Hennekam and M. Bass
  3. UAB Study of Individuals with Pitt Hopkins Syndrome – US Citizens Only at this Time
  4. Visit a Pitt Hopkins Clinic
  5. UT Health Science Center – San Antonio – Chromosome 18 Research
  6. Donate skin and/or blood samples to cell bank
  7. Facial Recognition Study UC-San Diego
  8. Buccal swab study — Dr. Goldenthal at Drexel University and Dr. Frye at University of Arkansas