Database for pediatric hemophilia treatment and outcomes
Official title: German Pediatric Hemophilia Research Database
Run by Goethe University · NCT02912143 · Data updated 2026-11-12
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 |
|---|---|
| Ages | Any age to 18 Years |
| Sex | All |
| Enrollment | 800 (estimated) |
| Sponsor | Goethe University Academic / other |
| Locations | 1 site (Frankfurt am Main, Hesse) |
| Status | Recruiting |
| Started | January 1, 2017 |
| Main results expected | December 31, 2027 |
| Study ends | December 31, 2028 |
| Registry record updated | March 8, 2023 |
| Trial ID | NCT02912143 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates include children diagnosed with hemophilia A or B with factor levels between 1% and 25%.
✕Probably not a fit
Patients who do not provide informed consent will not benefit from this study.
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 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.
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 gone: Other studies have successfully utilized observational databases to improve understanding and treatment of hemophilia, indicating a promising approach.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * hemophilia A or B * FVIII/FIX \<1% to 25% * informed consent Exclusion Criteria: * no consent
Where it's running
-
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
Similar studies
Other studies for the same condition or treatment. Recruiting studies are listed first.
-
SR604: a new treatment tested in adults with Hemophilia A/B or congenital Factor VII deficiency
This study tests a single and multiple doses of SR604 to see if it is safe and effective for adults with Hemophilia A or B, with or without inhibitors, and for those with congenital Factor VII deficiency.
-
ATHNdataset registry for people with bleeding and clotting disorders
This registry collects health, treatment, and patient-reported information from people with bleeding and clotting disorders seen at ATHN-affiliated centers to help improve care and outcomes.
-
Is synovial proliferation in haemophilia joints active or inactive?
This project will test whether ultrasound, MRI and elastography can tell if subclinical synovial proliferation in people with severe haemophilia is currently active so clinicians can treat earlier.
-
Observational study of blood clotting and bleeding disorders in Chinese patients
This study looks at blood clotting and bleeding problems in Chinese patients to see how common they are and what factors might affect them.
-
Evaluating the safety and effects of SR604 in healthy individuals and those with Hemophilia A or B
This study is testing a new drug called SR604 to see if it's safe and effective for healthy people and those with Hemophilia A or B.
-
Non-invasive prenatal diagnosis for single gene disorders
This study is testing a new way to safely diagnose single-gene disorders in unborn babies using a simple blood test from the mother, starting as early as 9 weeks into the pregnancy.
How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.