Get Involved In Research
Researchers may have the scientific expertise, but they need input from people living with hydrocephalus in order to ask the right questions and develop treatments that will benefit our entire community.
Join Our Hydrocephalus Patient Registry!
The HA Patient Powered Interactive Engagement Registry (HAPPIER) is an online database created to bring the patient perspective to hydrocephalus research. HAPPIER is collecting information on the treatment and symptoms, health, and quality of life of people living with hydrocephalus.
HAPPIER is a part of the larger HA Research Network that is working together to improve outcomes, find new treatments, and develop ways to prevent hydrocephalus all together. With the HA Network for Discovery Science (HANDS), Hydrocephalus Clinical Research Network (HCRN), and the Adult HCRN (AHCRN), HAPPIER will help accelerate hydrocephalus research by providing patient-generated and patient-centered data to the research community.
Take our Community Priorities Survey
This survey is the second step in developing our Top 10 list of research priorities which will be finalized at a workshop held this winter. The Top 10 list will guide our Research Programs in the years to come.
Participate in a Clinical Trial
Enrolling in clinical research trials is one way our community can become active participants in the quest to improve outcomes and find a cure for hydrocephalus.
Interested in Brain Donation?
Donating your brain for research is a very personal decision, and it is important to share your decision with family and loved ones. However, it can be difficult to find resources that answer common questions related to brain donation and even more difficult to navigate the process for ensuring your wishes are met. We have put together some resources that can help you make this important decision.