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.

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

Who’s involved?

Jenny Despotovic

Jenny Despotovic

Baylor College of Medicine

Rachael Grace

Rachael Grace

Boston Children’s Hospital

Michele Lambert

Michele Lambert

Children’s Hospital of Philadelphia

Cindy Neunert

Cindy Neunert

Columbia University

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

We do the work to collect all your records, at no cost, in your secure account. Access doctors’ notes you’ve never seen.

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.

See how your rare disease journey compares to others with your condition, and what’s helping.

Learn from your community

See how your rare disease journey compares to others with your condition, and what’s helping.

We’ll send you exclusive updates on the studies you’re contributing to and how you’re driving forward research.

Track your impact

We’ll send you exclusive updates on the studies you’re contributing to and how you’re driving forward research.

Join now

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 AllStripes 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.

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

Impact research

3. Impact research

Power multiple research projects at once by contributing your de-identified data

Still have questions?

Check out our FAQs

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.