Welcome to the website of the
Hereditary TTP Registry
Hereditary Thrombotic Thrombocytopenic Purpura (hTTP) or Upshaw-Schulman Syndrome (USS) is an ultra-rare and complex blood coagulation disease
read more about hereditary TTP
At present, the Hereditary TTP Registry has enrolled 231 participants from 18 different countries
click here to know which sites are involved
«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!»

Cristie Upshaw Travis
Daughter of Dr. Jefferson D. Upshaw
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
click here to read more about the study

Former staff members

2019 - 2023 Erika Tarasco, Project Management

2015 - 2021 Isabella Aebi-Huber, Site Coordinator

2020 - 2020 Rebecca Scheidegger, Assisting Project Management and Data Entry

2017 - 2019 H. Anette van Dorland, Project Management

2013 - 2016 Corinne Eschler, Assisting Site Coordination and Data Entry

2012 - 2015 Magnus, Mansouri, Central Data and Project Manager