Database for pediatric hemophilia treatment and outcomes
German Pediatric Hemophilia Research Database
This study is collecting information on how children with hemophilia A and B are treated and how it affects their lives to help improve their care and outcomes.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 800 (estimated) |
| Ages | N/A to 18 Years |
| Sex | All |
| Sponsor | Goethe University Academic / other |
| Locations | 1 site (Frankfurt am Main, Hesse) |
| Trial ID | NCT02912143 on ClinicalTrials.gov |
What this trial studies
This observational study aims to collect comprehensive data on the use of factor concentrates in the treatment of hemophilia A and B in children. It will document prophylactic and therapeutic approaches, complications, and quality of life outcomes for newly diagnosed patients. The study will also assess living circumstances to better understand the impact of hemophilia on young patients and their families. By gathering this information, the research seeks to improve treatment strategies and patient care.
Who should consider this trial
Good fit: Ideal candidates include children diagnosed with hemophilia A or B with factor levels between 1% and 25%.
Not a fit: Patients who do not provide informed consent will not benefit from this study.
Why it matters
Potential benefit: If successful, this study could enhance treatment protocols and improve quality of life for children with hemophilia.
How similar studies have performed: Other studies have successfully utilized observational databases to improve understanding and treatment of hemophilia, indicating a promising approach.
Eligibility criteria
Show full inclusion / exclusion criteria
Inclusion Criteria: * hemophilia A or B * FVIII/FIX \<1% to 25% * informed consent Exclusion Criteria: * no consent
Where this trial is running
Frankfurt am Main, Hesse
- Goethe University — Frankfurt am Main, Hesse, Germany (Recruiting)
Study contacts
- Principal investigator: Christoph Königs, PhD — Goethe University
- Study coordinator: Christoph Königs, PhD
- Email: christoph.koenigs@kgu.de
- Phone: +496963018
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.