However, research is not just the responsibility of scientists and doctors.
It is critical that patients participate in registries and clinical trials to ensure the advancement in understanding of this syndrome.
Clinical trials are biomedical or behavioral research studies on human participants that help determine whether a drug or treatment is effective, or provide a better understanding of the causes or progression of diseases. We maintain a current list of studies open to eligible hypothalamic hamartoma patients and caregivers below.
Current Clinical Trials
Genetic Basis of Familial Hypothalamic Hamartomas
Description: The Translational Neurogenetics Laboratory in Melbourne Australia is conducting a study on patients with an hypothalamic hamartoma. The study also includes those who have been diagnosed with a hypothalamic hamartoma and have features of Pallister-Hall Syndrome where variants on the Gli3 gene have been excluded. And lastly included in the study are families with more than one individual with a hypothalamic hamartoma, whether or not Gli3 variants have previously been tested.
Contact: Dr. Michael Hildebrand
Study to Determine Focused Ultrasound, Hypothalamic Hamartoma Adults 18+
Description: Adults with a hypothalamic hamartoma can participate in a focused ultrasound trial. Recruiting is now taking place at UVA.
Contact: Stacy Thompson
Focused Ultrasound Study, Hypothalamic Hamartoma Patients aged 12-16
Description: Patients with a hypothalamic hamartoma, aged 12-16, can participate in a focused ultrasound clinical trial at Nicklaus Children’s Hospital in Miami, FL.
Contact: Dr.John Ragheb