Accelerate drug development in ITP

Important research records are trapped in hospitals across the country. As a result, drug and gene therapy 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.

RDMD

Questions? Check out our FAQ

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By joining the ITP program, you will help advance new research. If you know other patients or families who may be interested, you can help by sharing this link.
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Why join the ITP program

For the future

For the future

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

For the ITP community

For the ITP community

Jumpstart research and increase knowledge and understanding of ITP.

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

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.

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.

  • Jumpstart
  • Accelerate
  • Insights

The ITP program is in the jumpstart stage.

Be part of research

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.

   

Biomarker Study

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.