How YOU Can Participate in Research

Hope for HH believes that research is our best hope for advancing treatments and eventually finding a cure for Hypothalamic Hamartomas. However, research is not just the responsibility of scientists and doctors. It is critical that patients participate in registries and clinical trials to advance our understanding of this disease.


Registries are collections of data that help researchers better understand a disease. They can help researchers identify common patterns among patients. Hope for HH is a proud member of the Rare Epilepsy Network (REN). HH has joined with other rare epilepsy syndromes to collect information from patients and caregivers that researchers can use to better understand these conditions. Sign UP for the REN here.

Clinical Trials

Clinical Trials (or Studies) are studies that help to determine if a drug or treatment is effective, whether it causes any side effects, etc. We maintain a list of Studies HH patients and caregivers can participate in below.

Current Clinical Trials

  • Study to determine Focused Ultrasound, HH adults, 18+

     HH Adults – hear more information about a Focused Ultrasound trial for HH recruiting now at UVA.

     Contact Stacy Thompson to learn more here

  • Focused Ultrasound, HH patients ages 8-22

HH Patients ages 8-22 can participate in a  new Focused Ultrasound Clinical Trial at Miami Children’s Research Institute.

More info here.

  • Quality of Life Study, Adults with rare disorders like HH.

HH Adults – participate in the largest Quality of Life study just for adults living with rare disorders like HH.

More info here.

  • Sleep Study & Chronic Conditions, Rare Epilepsy Patients.

The Children’s Hospital of Philadelphia (CHOP) in collaboration with the Rare Epilepsy Network is conducting a study about sleep to understand how sleep health relates to chronic conditions like autism and epilepsy. Just 10-15 minutes to participate. 

More info here.