«The fact that the medical research of a son of the Mississippi Delta, born in Louise, MS in 1929, is being continued by a team of researchers all over the world, still excites me!»
The Hereditary TTP Registry participated in the first-in-human study evaluating a recombinant human ADAMTS13 as therapeutic option in the treatment of congenital TTP
Background & Aim Background
Thrombotic thrombocytopenic purpura (abbreviated TTP) is a rare complex blood clotting disorder presenting itself by blood clots in small and the smallest blood vessels, leading to…
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Our Supporters
Patients and their participating family members
International site collaborators (Physicians)
Our Sponsors
Cristie Upshaw Travis
The daughter of Dr. Jefferson D. Upshaw provided us with a picture…
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Publications
Wyatt KD, Kohorst MA, Coon LM, Hurley RM, van Dorland HA, Arndt CAS
Hereditary Thrombotic Thrombocytopenic Purpura in a 9-Month Old: Diagnosing and Managing an Ultra-rare Disorder
J Pediatr…
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How to participate
1. Establishing Contact
As a first contact no matter if you are a patient, a family member, or a physician, you are very welcome to send us an email to support@ttpregistry.net
2. What…
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Contact us
For questions or further information about the Hereditary TTP Registry, please contact us through the coordinating team or by sending an email to support@ttpregistry.net
Department of…
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Participating Sites
The Hereditary TTP Registry currently includes data of 239 participants from sites in 18 countries.
Main coordinating centre
Inselspital Bern, Switzerland
Sub coordinating centres
…
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Advisory Board Sara K. VESELY, PhD Statistician, Extern University of Oklahoma Health Sciences Center, Department of Biostatistics and Epideiology
801 NE 13th Street OK 73104 Oklahoma City ,CHB 358¦ OKC…
Links Information on TTP (hereditary as well as acquired TTP)
Wikipedia The Wikipedia article about hereditary thrombotic thrombocytopenic purpura (hTTP) was written by our group. Wikipedia
…
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Advantages of participating
In case one of your patients experienced or experiences acute or subacute onset of symptoms related to TTP, was diagnosed and is treated for TTP, or is suspected for hereditary TTP, you…
