Get Involved in Research

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.

FAMILY REGISTRY

Help us to document detailed information about our children that can be used in future research and symptomatic treatment options. Join our Family Registry Now!

Registry

Get counted in our Pitt Hopkins Census by filling out this survey (takes less than 3 minutes).

Census

PTHS Clinics

Bring PTHS patients to a dedicated clinic and they will focus on providing knowledge-based medical care and serving the comprehensive medical needs of individuals with Pitt Hopkins Syndrome.

Pitt Hopkins Clinics

Skin Samples

Skin samples or sample repositories help support current or future research and allow samples to be more easily accessible for research organizations.

Donate Samples

Current Studies & Clinical Trials

Available clinical trials and studies.

Microbiota Transfer Therapy Clinical Trial #2

A clinical trial to study the use of Microbiota Transfer Therapy in adults and children with Pitt Hopkins syndrome.

Metabolon Study

A study that involves taking a blood and stool sample, to help find potential biomarkers for future use in clinical trials and studies.

Natural History of Pitt Hopkins with Ciitizen

Join the Ciitizen platform to share your loved ones health history in a secure and private way – to help us learn about the long term health history of those who live with Pitt Hopkins Syndrome.

Would you like to know about new research opportunities and clinical trials as information becomes available?
Be sure to sign up for our parent email list to stay informed!

Sign-Up Now