CTU Bern

Hereditary TTP Registry: New project website released

Thrombotic thrombocytopenic purpura (hTTP, also known as Upshaw-Schulman syndrome) is an ultra-rare complex inherited blood clotting disorder presenting itself by blood clots in small and the smallest blood vessels, leading to multiple ischemic organ damage when left untreated.

The ultimate goal of the registry is to develop evidence-based recommendations for the treatment and surveillance of patients suffering from hereditary TTP. In pursuit of this goal, the primary objective of this registry is to collect as much information as possible on the clinical presentation, disease course, disease-modifying factors, and treatment modalities used in patients suffering from hereditary TTP. The secondary objective of the registry is to document potential adversary effects of long-term plasma treatment in patients with hereditary TTP.

Under the lead of Prof. Kremer Hovinga, principal investigator (University Clinic of Hematology and Central Hematology Laboratory of the Inselspital Bern), this registry has been enrolling participants since 2006. The new website shall aid in recruiting further participants from all over the world, as only through more data and knowledge, the care and treatment can be innovated.

For further information, please visit the website https://ttpregistry.net/.