Registry for patients with hemophilia and severe bleeding disorders in Switzerland

Swiss Hemophilia Registry

This study is collecting information from patients with hemophilia and severe bleeding disorders in Switzerland to see how well different treatments are working in everyday life.

Quick facts

• Study type: Observational
• Enrollment: 900 (estimated)
• Sex: All
• Sponsor: Swiss Hemophilia Network (other)
• Locations: 19 sites (Aarau and 18 other locations)
• Trial ID: NCT02512250 on ClinicalTrials.gov

What this trial studies

The Swiss Hemophilia Registry aims to collect comprehensive data on the use of factor concentrates for both prophylactic and therapeutic purposes in patients diagnosed with hemophilia and other severe bleeding disorders. This observational registry will gather information from various medical centers across Switzerland, focusing on treatment outcomes and patient experiences. By documenting these details, the registry seeks to enhance understanding of treatment efficacy and safety in real-world settings.

Who should consider this trial

Good fit: Ideal candidates for this registry are individuals diagnosed with hemophilia or other severe bleeding disorders who can provide informed consent.

Not a fit: Patients without a diagnosis of hemophilia or severe bleeding disorders will not benefit from this registry.

Why it matters

Potential benefit: If successful, this registry could improve treatment strategies and outcomes for patients with hemophilia and severe bleeding disorders.

How similar studies have performed: Other registries focusing on hemophilia have shown success in improving treatment protocols and patient outcomes, indicating that this approach is beneficial.

Eligibility criteria

Inclusion Criteria:

Diagnosis of hemophilia or other severe bleeding disorders. Signed inform consent

Exclusion Criteria:

None

Where this trial is running

Aarau and 18 other locations

• Kantonsspital Aarau Zentrum für Onkologie/Hämatologie und Transfusionsmedizin — Aarau, Switzerland (RECRUITING)
• Kinderklinik — Aarau, Switzerland (RECRUITING)
• Universitätsspital Basel Diagnostische Hämatologie — Basel, Switzerland (RECRUITING)
• Universitätskinderspital beider Basel (UKBB) Abteilung Onkologie/Hämatologie — Basel, Switzerland (RECRUITING)
• Ospedale San Giovanni — Bellinzona, Switzerland (RECRUITING)
• Servizio di Ematologia Ospedale Regionale di Bellinzona e Valli — Bellinzona, Switzerland (RECRUITING)
• Inselspital, Universitätsspital Bern Poliklinik für Hämatologie — Bern, Switzerland (RECRUITING)
• Kantonspital Graubünden — Chur, Switzerland (RECRUITING)
• Unité d'Hémostase HUG — Genève, Switzerland (RECRUITING)
• Unité d'Oncologie-Hématologie pédiatrique, Hôpital des Enfants HUG — Genève, Switzerland (RECRUITING)
• Centre Hospitalier Universitaire Vaudois Service d'Hématologie — Lausanne, Switzerland (RECRUITING)
• Policlinique d'onco-hématologie péd., CHUV — Lausanne, Switzerland (RECRUITING)
• Kantonsspital Luzern Abteilung Hämatologie — Luzern, Switzerland (RECRUITING)
• Kinderspital Luzern — Luzern, Switzerland (RECRUITING)
• Kinder und Erwachsenenzentrum Sion Service Régional Valaisan de Transfusion Sanguine CRS — Sion, Switzerland (NOT_YET_RECRUITING)
• Ostschweizer Kinderspital St. Gallen — St. Gallen, Switzerland (RECRUITING)
• Kantonspital St. Gallen — St. Gallen, Switzerland (RECRUITING)
• University Children's Hospital — Zürich, Switzerland (RECRUITING)
• University Hospital Zürich — Zürich, Switzerland (RECRUITING)

Study contacts

• Study coordinator: Manuela Albisetti, MD

Conditions: Hemophilia and Other Severe Bleeding Disorders