There are many ways to contribute to research. Whenever we learn about a new and appropriate study that is recruiting patients, we update the list below. Participating in research is a personal decision, and not one which every family feels is right for them. If you are considering participating in a research study, you are welcome to call NTSAD to discuss the benefits and risks.
RDMD for GM1 Gangliosidosis
You can accelerate drug development in GM1 (GM1 gangliosidosis). Important research records are trapped in hospitals across the country. As a result, drug researchers can’t access the information they need to advance treatments. But as a patient, you can. Unlock your records and contribute them to research, privately and securely.
Patient Insights Network (PIN)
The following PINs have been set up in collaboration with Canavan Research Illinois, the Canavan Foundation and the Cure GM1 Foundation respectively. A GM2 (Tay-Sachs, Sandhoff) will be established soon as a collaboration with the Cure Tay-Sachs Foundation.
Canavan Patient Insights Network (PIN) - Join here.
GM1 Patient Insights Network (PIN) - Join here.
GM2 Patient Insights Network (PIN) - Join here.