Registry for managing hemophilia in children across Europe

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This observational study aims to collect comprehensive clinical data on children diagnosed with hemophilia A or B, focusing on factors influencing bleeding patterns and inhibitor development. It involves a multicenter approach, gathering information from various treatment centers to ensure a complete cohort and prevent selection bias. The study will document patient characteristics, treatment details, and long-term outcomes without altering routine clinical care or increasing patient burden.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* Diagnosed with Haemophilia A or B
* Factor VIII/ IX activity of \<1 to 25%
* Complete records of Factor treatment and bleeds
* Treated in one of the participating centres

Exclusion Criteria:

* Patients referred because of an inhibitor\*
* Informed consent not obtained

Where it's running

• Medical University of Vienna - Department of Paediatrics
  Vienna, Austria Recruiting
• Service of Pediatric Haematology University Hospital Leuven
  Leuven, Belgium Recruiting
• Division of Hematology/Oncology Hôpital St Justine
  Montreal, Canada Recruiting
• Division of Haematology/Oncology Hospital for Sick Children
  Toronto, Canada Recruiting
• Haemophilia Comprehensive Care Centre, Centre for Thrombosis and Haemostasis Children's University Hospital Brno
  Brno, Czechia Recruiting
• Department of Paediatric Haematology/oncology - University Hospital Motol
  Prague, Czechia Recruiting

Study contacts

• Principal investigator: Gili Kenet, PhD, MD — The National Hemophilia Center Ministry of Health Sheba Medical Center Ramat Gan, Israel
• Study coordinator: Angelique Hermeling
• Email: a.hermeling@pednet.eu
• Phone: +31850299993

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Long-term observation of non-cancer blood disorders

  This study is tracking people with blood disorders like hemophilia and thrombosis for at least 15 years to see how their conditions change over time and gather useful information for doctors and researchers.

  Recruiting at 74 sites American Thrombosis and Hemostasis Network · Phoenix, Arizona and 75 other locations · NCT04398628

• Weekly efanesoctocog alfa for hemophilia A with joint synovial hypertrophy

  This trial tests whether taking efanesoctocog alfa once a week for 12 months can reduce synovial hypertrophy in people aged 12 and older with moderate to severe hemophilia A.

  Recruiting at 13 sites Phase 4 Sanofi · Los Angeles, California and 18 other locations · NCT06941870

• Using Hemlibra to treat mild hemophilia A

  This study is testing if Hemlibra can safely help men with mild hemophilia A manage their condition and improve their joint health and quality of life.

  Recruiting Phase 4 Indiana Hemophilia &Thrombosis Center, Inc. · Indianapolis, Indiana · NCT04567511

• Hemophilia A: comparing long-acting FVIII replacement vs non-FVIII therapy in kids

  This study tests whether children with moderate to severe Hemophilia A on long-acting FVIII or non-FVIII therapies form clots differently and develop small joint bleeds or early joint changes.

  Recruiting University of Texas Southwestern Medical Center · Dallas, Texas · NCT07692217

• Mother-and-child hemophilia A program

  See if following pregnant people with a severe hemophilia A genotype and their children from pregnancy through early childhood can identify factors linked to maternal bleeding and the child’s development of anti‑FVIII antibodies.

  Recruiting University of Washington · Seattle, Washington · NCT07414511

• Surgical Use of Efanoctocog alfa in Hemophilia A Patients

  This observational study looks at how efanesoctocog alfa (Altuvoct) is used around surgery in people with hemophilia A to see if it helps control bleeding.

  Recruiting Hospices Civils de Lyon · Bron · NCT07723560

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.