Why join the ITP program
For the future
Help researchers get the information they need to advance development of new drug and gene therapies.
For the ITP community
Jumpstart research and increase knowledge and understanding of ITP.
See all your records in one place. Track how you are contributing to research and be notified about new clinical trials.
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 &
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.
“Patients shouldn’t be bystanders in drug development.”
Four years ago I was diagnosed with a rare disease called NF2. I realized that, like most rare diseases, there were no adequate treatments available. I asked myself what I personally could do to help drive drug development forward.
I learned that the needed information is out there, but trapped in hospitals. We started RDMD to give patients the ability to unlock that information, and have a personal impact on drug development in their condition.
– Onno, Founder of RDMD
Our work with ITP research
Primary immune thrombocytopenia (also known as idiopathic thrombocytopenic purpura, or ITP), is an autoimmune bleeding disorder. It is caused by low levels of platelets, which are involved in clotting and are important for preventing and stopping bleeding. Some patients have symptoms such as bleeding under the skin, recurrent nosebleeds, and, rarely, dangerous bleeding in the GI system or in the brain. Many patients also experience fatigue. ITP can affect children and adults, and there are several treatment options available. Children often improve over time, with or without treatment. In adults, patients often respond to initial therapy but maybe experience relapses. There is a subset of ITP patients who do not respond well to treatment and remain at high risk for dangerous, life-threatening bleeding events.
RDMD drives research on your condition as well as research on general health and wellness. These are the current research projects we aim to complete in order to increase our understanding of idiopathic thrombocytopenic purpura and drive drug development and clinical trials.
ITP Treatment Outcomes
While there are several treatments used for ITP, they do not work for all patients, and many patients experience disease progression or a relapse of symptoms, Learning more about why certain treatments are tried and how well they worked for each patient will help researchers understand what types of therapies might work for ITP in the future.
Why do some people develop ITP, while others do not? Why are some cases of ITP very severe, while some cases are very mild? By studying clinical information from the medical record and genetic data from patients, researchers might be able to pinpoint why there is so much variability in this disease and identify new ways to diagnose and treat ITP patients.
Hackathon & Discovery
The cause of ITP is not fully understood. Analyzing genetic data and information from the medical chart will help researchers understand possible causes of ITP and help them to pinpoint different ways to treat the disease.