25 patient histories needed for new Hunter syndrome research

(Hunter syndrome - MPS II)

RECRUITING NOW: RDMD is working with Denali Therapeutics to learn from the medical records of Hunter syndrome patients. This will help design better potential future trials.

All data from the records will be de-identified by RDMD, meaning no identifying information like names or phone numbers will be given to researchers.

This research can’t move forward without you!

0/25 joined
We collect the records on your behalf. No scanning, no uploading, you’re done!
Neo.life
Neo.life
Mens Health Magazine
Mens Health Magazine
Village Global
Village Global
Forbes
Forbes
Techcrunch
Techcrunch
CNBC
CNBC
LUX
LUX
RDMD Research for Hunter syndrome is approved and monitored by an independent ethics review board called WIRB (Western Institutional Review Board). WIRB is a group of people who review research studies to protect the rights and welfare of human subjects. They provide in-depth regulatory expertise to support development of research protocols and documentation.Read more.

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


Your dashboard
Your dashboard

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.

  • Jumpstart
  • Accelerate
  • Insights

The Hunter syndrome program is in the jumpstart stage.

Be part of research

How it works

Sign up

1. Sign up

Create your private account and review our research consent (takes about 10 minutes)

We get to work

2. We get to work

We do all the behind-the-scenes work to retrieve and process your records

Empower research

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

Be part of research

Questions? Check out our FAQ

Our values & principles.

1
Patients own their data

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.

2
We protect patient privacy

We abide by a strict research consent and privacy policy. We only share de-identified data with researchers, foundations, and therapeutic companies with patients’ consent. Protecting the privacy of patients and ensuring the security of their information is our highest priority.

3
Researchers gain access

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.

4
Inclusiveness in the community

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.

5
Driving forward therapeutic development

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.