ITP Natural History Study Registry

Join thousands of patients living with ITP from across the globe and register with PDSA’s ITP Natural History Study Registry to advance research and improve the quality of life of ITP patients.

Register Today and Help Advance Research

Starting on Rare Disease Day, February 28, 2017, Enroll in PDSA’s national patient registry for individuals with Immune Thrombocytopenia (ITP) to advance research and improve the quality of life of patients.

The National Organization for Rare Disorders (NORD) supported by a cooperative agreement with the U.S. Food and Drug Administration (FDA), has chosen the Platelet Disorder Support Association (PDSA) to participate in the NORD Natural History Study Registry Project.


What is the ITP Natural History Study Registry?

The ITP Natural History Study Registry is an international patient-consented registry of individuals with ITP. The registry aims to collect data on the natural progression of ITP, enabling PDSA to gather data on diagnosis and treatment, management of care, quality of life, and clinician reporting. The registry is administered by PDSA and overseen by NORD and a committee of leading hematologists, ITP patients, and caregivers.


Why Register?

Registries can provide health care professionals and researchers with first-hand information about people with certain conditions like ITP and other platelet disorders, individually and as a disease population, to increase our understanding of that condition over time.

Rare diseases like ITP have posed unique challenges to researchers and drug developers because of small patient populations, lack of data, clinical endpoints that are often unclear, and enrollment and retention challenges for clinical trials. NORD’s Natural History Studies project empowers patients and families to help eliminate some of the uncertainty in rare disease research, making way for progress.

Advance Research

Natural history studies are longitudinal studies that aim to fill research gaps, which helps medical researchers better understand how diseases progress over time. They yield vital information essential to clinical trial design, such as biomarkers, demographics, important clinical symptoms, genetic and environmental variables, and patient perspectives.

Make a Difference

Your participation in the ITP Natural History Study Registry is likely to increase what we know about ITP and other platelet disorders, help health care professionals improve treatment, and allow researchers to design better studies on a particular condition, including development and testing of new treatments. The more patients registered the more data researchers will have to further their work, which can accelerate research into new therapies for ITP and potentially a cure one day.


How to Enroll

Enroll in the ITP Natural History Study Registry on Rare Disease Day, February 28. 2017! For more information call PDSA at 1-87-PLATELET 877-528-3538 (toll free) or email akruse@pdsa.org. Please rest assured that your identity will be protected in this secure, confidential HIPAA compliant registry, and there is no cost for you to participate. Thank you for Making the World of ITP a more manageable place to be!

 

 

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