Power faster, better drug development for ITP

(idiopathic thrombocytopenic purpura)

Help advance research by sharing your–or your child’s–experience with ITP (also known as immune thrombocytopenia). We collect and de-identify medical records, then work with researchers to design better clinical trials with faster outcomes and a higher chance of success.

You also receive all your records in one place, at no cost, to help manage your care.

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Neo.life
Neo.life
Mens Health Magazine
Mens Health Magazine
Village Global
Village Global
Forbes
Forbes
Techcrunch
Techcrunch
CNBC
CNBC
LUX
LUX

Who’s involved?

Jenny Despotovic (Baylor College of Medicine)
Jenny Despotovic (Baylor College of Medicine)
Rachael Grace (Boston Children’s Hospital)
Rachael Grace (Boston Children’s Hospital)
Michele Lambert (Children’s Hospital of Philadelphia)
Michele Lambert (Children’s Hospital of Philadelphia)
Cindy Neunert (Columbia University)
Cindy Neunert (Columbia University)
RDMD Research for ITP 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 ITP program?

Key benefits for you:

Reduce the time for idiopathic thrombocytopenic purpura 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 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, nosebleeds, and, rarely, dangerous bleeding in the GI system or in the brain. ITP can affect children and adults, and there are several treatment options available. There is a subset of ITP patients who do not respond well to existing treatments.

The latest on our research: We have four physician experts signed on to work with RDMD on ITP and we are currently working with them to determine the best topic for an upcoming research project. We’re beginning recruitment for the ITP program now, and have some exciting milestones coming up. Join the program today to stay updated and to contribute to research!

  • Jumpstart
  • Accelerate
  • Insights

The ITP 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.