You can accelerate drug development in cystinosis

(cystinosis)

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.

Questions? Check out our FAQ
Join the cystinosis program in 10 minutes

Help this community hit the research goal by sharing with your network!

Neo.life
Neo.life
Mens Health Magazine
Mens Health Magazine
TEDMED
TEDMED
Forbes
Forbes
Techcrunch
Techcrunch
CNBC
CNBC
LUX
LUX

Who’s involved?

Cystinosis Research Network
Cystinosis Research Network
RDMD Research for cystinosis 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 cystinosis program?

Key benefits for you:

Reduce the time for cystinosis drug development

All your medical data in one place

Follow new clinical trials

Make your de-identified health information part of multiple research projects


Your dashboard
Your dashboard

Our work with cystinosis research

Cystinosis is a rare genetic disorder that causes the buildup of an amino acid called cystine in organs, including the kidneys and brain. There are three different forms known as nephropathic cystinosis, intermediate cystinosis and non-nephropathic (or ocular) cystinosis.

Nephropathic cystinosis develops when children are infants and is by far the most common and severe form. Through treatment and improvements in kidney transplantation, this type of cystinosis has shifted from a fatal kidney disorder to a chronic, multisystem disorder.

The latest on our research: We are jumpstarting our cystinosis program to accelerate research on the disorder to ultimately improve treatment options. We welcome all parents or patients interested in participating and spreading the word to the cystinosis community.

  • Jumpstart
  • Accelerate
  • Insights

The cystinosis 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.