Forum medizinische Register Schweiz

The Swiss Hemophilia Registry (SHR) is a registery for medical research and quality assurance in the care of people with hemophilia A (deficiency of coagulation factor VIII), hemophilia B (deficiency of coagulation factor IX ) and other severe coagulation factor deficiencies. The SHR aims to ensure high quality data: • on the prevalence of hemophilia A and B, as well as other severe congenital bleeding disorders (geographic distribution, the characteristics and the evolution of the population affected) • on the use prophylactic and therapeutic factor products • on the incidence of the development of inhibitors (antibodies against coagulation factor VIII or IX) in Switzerland that are to be made available for health monitoring allowing rapid investigation in case of suspicion of new contagious agents transmitted by or other rare side effects of coagulation factor products and other hemophilia treatments. The SHR represents a systematic collection of data, i.e. standardized medical documentation that makes data more comparable and thus easier to evaluate in order to answer practice-relevant questions. Hemophilia is a rare disease and the strength of a registry lies in the possibility of long-term observation of the disease and its treatment to draw meaningful conclusions.

Hämatologie

Klinisch

Soziodemographie,  Krankheit/ Diagnose,  Intervention/Therapie,  Risiken/ Gesundheitsrelevante Bedingungen

Aktiv, seit 2016

Patients with hemophilia or other inherited bleeding disorders.

Periodisch, Annualy

National, All hemophilia centers in Switzerland participate. The few patients treated by general practitioners, who are not attached to a hemophilia center are not enrolled in the registry.

Andere: Swiss Hemophilia Network

Swiss Hemophilia Network

Swiss Hemophilia Network (SHN)
Bahnhofstrasse 55
5001 Aarau