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, store, and retrieve data on the natural progression of ITP, enabling PDSA and other researchers to gather data on diagnosis and treatment, management of care, quality of life, clinician reporting, and characterization of the ITP population as a whole. The registry is administered by PDSA and overseen by the National Organization for Rare Disorders (NORD) and a committee of leading hematologists, ITP patients, and caregivers.
What type of information will be collected?
The ITP Natural History Study Registry will collect data on:
The ITP Natural History Study Registry follows strict government guidelines to assure patient information is protected. The registry platform is served over HTTPS, providing encryption of traffic to prevent eavesdropping and man-in-the-middle attacks. Communication between the registry platform application server and the database are also encrypted.
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.
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.
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.
Thank you for Making the World of ITP a more manageable place to be!