Who’s involved?
Cystinosis Research Network
How sharing your journey powers progress
Jumpstart new research for your rare disease
Your (or your loved one’s) medical records contain clues that can lead to new treatments.
Determine important symptoms to target
AllStripes researchers learn from patient records what would truly improve quality of life.
Speed up development of treatments
Using cutting-edge tech we analyze your community’s data to improve trial design and chances of success.
Be part of multiple research efforts, without leaving home
Your community’s de-identified records can advance multiple treatment studies.
BENEFITS TO JOINING
What you’ll get along the way
Access your records
We do the work to collect all your records, at no cost, in your secure account. Access doctors’ notes you’ve never seen.
Learn from your community
See how your rare disease journey compares to others with your condition, and what’s helping.
Track your impact
We’ll send you exclusive updates on the studies you’re contributing to and how you’re driving forward research.
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.
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. Impact research
Power multiple research projects at once by contributing your de-identified data
Still have questions?
Check out our FAQsOur values & principles.
1Patients 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.
2We 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.
3Researchers 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.
4Inclusiveness 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.
5Driving 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.