Why join the Hunter syndrome program?
Help drug development in Hunter syndrome with de-identified data
Get access to updates on RDMD Hunter syndrome research
Opportunity to join an RDMD webinar for Hunter syndrome patients
All your medical records in one place and we collect all the records for you
Our work with Hunter syndrome research
Hunter syndrome, also known as mucopolysaccharidosis (MPS) type II, is a severe lysosomal storage condition that occurs when cells can’t break down long chains of sugar molecules. This causes progressive damage to many organs. Hunter syndrome primarily affects males, with symptoms starting in early childhood. Patients with severe disease experience progressive cognitive decline, breathing issues, and cardiac disease, and many pass away at a young age. New and more effective treatments are needed for Hunter syndrome.
The latest on our research: RDMD is working on a natural history for Hunter syndrome with the biopharmaceutical company Denali Therapeutics. This research will help design better potential future trials and we are actively recruiting for participants in the U.S.
How it works
1. Sign up
Create your private account and review our research consent (takes about 10 minutes)
2. We get to work
We do all the behind-the-scenes work to retrieve and process your records
3. Empower research
Track your contribution to research projects and, based on your records, find out if you qualify for new clinical trials based on your records
Our values & principles.
We believe that the only way to keep data accessible to the researchers who need it is by enabling patients to own and control their own data. Patients decide for themselves whether they want to privately and securely contribute to research, rather than having the decision made on their behalf.
We aim to make useful data accessible to all researchers who have legitimate research questions or research programs. For academic research, we offer access without charge. We take research ethics seriously, and we have policies in place to ensure that research is conducted with integrity.
We don’t like to take sides—we give all members of the community the option to get involved. Success in rare disease research takes a village and we always welcome additional collaborators who can advance and benefit from the mission.
Our primary mission is to accelerate drug development, so we prioritize generating insights specifically relevant to therapeutic research. We invest deeply in quality, security, and compliance to make this a reality.