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