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!
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Neo.life
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Mens Health Magazine
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Village Global
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Xconomy
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Techcrunch
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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

For the future

For the future

Help researchers get the information they need to advance development of new drug and gene therapies.

For the Hunter syndrome community

For the Hunter syndrome community

Jumpstart research and increase knowledge and understanding of Hunter syndrome - MPS II.

For you

For you

See all your records in one place. Track how you are contributing to research and be notified about new clinical trials.

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

Clinical trials for Hunter syndrome

Stay in the loop. We’re monitoring Hunter syndrome - MPS II clinical trials that may be interesting for patients. We can contact you if we find potentially matching trials, and keep you up to date if there are new trials or changes.

Join the Hunter syndrome program

Tracking 5 trials

ShireBy invitation only

Study of Long Term Safety and Clinical Outcomes of Idursulfase IT and Elaprase Treatment in Pediatric Participants Who Have Completed Study HGT-HIT-094

Regenxbio Inc.Recruiting

RGX-121 Gene Therapy in Patients With MPS II (Hunter Syndrome)

Green Cross CorporationRecruiting

A Study of GC1111 in Hunter Syndrom Patients

Sangamo TherapeuticsRecruiting

Ascending Dose Study of Genome Editing by the Zinc Finger Nuclease (ZFN) Therapeutic SB-913 in Subjects With MPS II

JCR Pharmaceuticals Co., Ltd.Active, not recruiting

A Study of JR-141 in Patients With Mucopolysaccharidosis II

See clinicaltrials.gov for more information

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.

How we got started

“Patients shouldn’t be bystanders in drug development.”

– Onno Faber (Founder of RDMD)

Four years ago, I started experiencing hearing loss in my left ear. Doctors prescribed me steroids, thinking it was an infection, but the deterioration did not slow down. After numerous failed treatments, a specialist finally ordered an MRI, whereupon he discovered a large tumor on my left hearing nerve. Months later, another tumor was discovered in my right hearing nerve, and another on my spine. I was diagnosed with a rare genetic disease called NF2 (Neurofibromatosis Type 2), a disease that affects only 1 in 30,000 people. It completely changed my perspective.

All my life, I’ve been a technology entrepreneur, beginning with a tech company I started in high school. I’m now applying everything I’ve learned throughout my career to build RDMD, where we’re helping to accelerate treatments for patients with rare disease. Our mission is ambitious, but I can’t imagine working on anything more important than this.

– Onno

Onno FaberPhoto Credit: from Neo.life by Damien Maloney

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 cannot break down long chains of sugar molecules known as glycosaminoglycans. 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 pass away at a young age. Patients with Hunter Syndrome also have short stature, a larger head and tongue, distinctive facial features, hearing loss, a large spleen and liver, and joint problems. There is a need for new treatments in Hunter Syndrome.

RDMD drives research on your condition as well as research on general health and wellness.

  • Jumpstart
  • Accelerate
  • Insights

The Hunter syndrome program is in the jumpstart stage.

Be part of research