Status:

RECRUITING

Genotype and Phenotype Correlation in Hereditary Thrombotic Thrombocytopenic Purpura (Upshaw-Schulman Syndrome)

Lead Sponsor:

Insel Gruppe AG, University Hospital Bern

Collaborating Sponsors:

Swiss National Science Foundation

Mach Gaensslen Foundation

Conditions:

Thrombotic Thrombocytopenic Purpura

Congenital Thrombotic Thrombocytopenic Purpura

Eligibility:

All Genders

Brief Summary

Hereditary thrombotic thrombocytopenic purpura (Upshaw-Schulman syndrome) is a rare disorder characterized by thrombocytopenia as a result of platelet consumption, microangiopathic hemolytic anemia, o...

Detailed Description

Background Thrombocytopenia and microangiopathic hemolytic anemia together with a severely deficient ADAMTS13 activity confirm the diagnosis of acute thrombotic thrombocytopenic purpura (TTP). Today ...

Eligibility Criteria

Inclusion

  • Inclusion Criteria:
  • Severe ADAMTS13 deficiency ( ≤ 10% activity) and no ADAMTS 13 inhibitor on two or more occasions at least one month apart
  • Being a family member of a confirmed or suspected patient
  • Molecular analysis of ADAMTS13 gene with one or more mutations and/or positive infusion trial (full recovered ADAMTS13 activity after infused fresh frozen plasma (FFP) with a plasma half-life of 2-4 days)

Exclusion

    Key Trial Info

    Start Date :

    October 1 2006

    Trial Type :

    OBSERVATIONAL

    Allocation :

    ESTIMATED

    End Date :

    October 1 2030

    Estimated Enrollment :

    450 Patients enrolled

    Trial Details

    Trial ID

    NCT01257269

    Start Date

    October 1 2006

    End Date

    October 1 2030

    Last Update

    October 11 2023

    Active Locations (7)

    Enter a location and click search to find clinical trials sorted by distance.

    Page 1 of 2 (7 locations)

    1

    University of Oklahoma Health Sciences Center, Department of Medicine, PO Box 26901

    Oklahoma City, Oklahoma, United States, 73126-0901

    2

    Medical University of Vienna, Department of Medicine 1, Div. Hematology and Hemostasis Waehringer Guertel 18-20

    Vienna, Austria, A-1090

    3

    Institute of Hematology and Blood Transfusion, Coagulation Laboratory, U nemocnice 1

    Prague, Czechia, CZ-12820

    4

    University Medical Center Hamburg-Eppendorf, Department of Pediatric Hematology and Oncology, Martinistr 52

    Hamburg, Germany, D-20246