ArticleResearch and practice in thrombosis and haemostasis2023
The World Federation of Hemophilia World Bleeding Disorders Registry: insights from the first 10,000 patients.
Article in Research and practice in thrombosis and haemostasis, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
22 citing papers in PubMed, 2 syntheses or guidelines pooled it, 34 citations in OpenAlex.
- The use of artificial intelligence in the prevention and management of bleeding disorders: a systematic review.Frontiers in medicine · 2025Pooled it
- The prevalence of Hemophilia A in males in Africa: evidence from a systematic review and meta-analysis.BMC public health · 2024Pooled it
- Gene therapy for hemophilia B: results from the phase 1/2 101HEMB01/02 studies.Blood advances · 2025Trial
- Personalized prophylactic therapy optimization in hemophilia A using a hybrid PK-PD-TTE model and deep RL.Journal of pharmacokinetics and pharmacodynamics · 2026Article
- Treatment of von Willebrand disease.Blood advances · 2026Review
- Twelve-month follow-up of a real-world, noninterventional study evaluating the impact of emicizumab on bleeding episodes, joint health, and quality of life in people with hemophilia A.Therapeutic advances in hematology · 2026Article
- A Paradigm Shift in Hemophilia Care: The Promise of Gene Therapy.Current gene therapy · 2026Review
- Knowledge on the Haemophilia Care Among Healthcare Providers in Tanzania: A Multicenter Cross-Sectional Study.Journal of blood medicine · 2026Article
- The Epigenetic Landscape of Hemophilia.Current molecular medicine · 2026Review
- Article
- Patient-Centred Management of Well-Controlled Haemophilia: Obtaining Opinions and Definitions Through a Delphi Consensus.Journal of clinical medicine · 2025Review
- The Use of Primary Care Physiotherapy for Persons With Bleeding Disorders in the Netherlands-A Retrospective Study of Health Records.Haemophilia : the official journal of the World Federation of Hemophilia · 2025Article
- Response to comments on inclusion of cryoprecipitate, pathogen-reduced on the WHO model lists of essential medicines for adults and children: a call for action.Blood transfusion = Trasfusione del sangue · 2025Article
- Contemporary approaches to treat people with hemophilia: what's new and what's not?Research and practice in thrombosis and haemostasis · 2025Review
- The role of public health in rare diseases: hemophilia as an example.Frontiers in public health · 2025Review
- Journeying Towards Excellence in the Care of Patients with Haemophilia and Other Inherited Bleeding Disorders From a Developing World: Insights From Tanzania.Journal of blood medicine · 2025Review
- Emerging Therapies in Hemophilia: Improving Equitable Access to Care.Journal of blood medicine · 2025Review
- Transforming Hemophilia A Care: Insights into New Therapeutic Options.Life (Basel, Switzerland) · 2024Review
- Freedom From Bleeds With Low-Dose Emicizumab Prophylaxis in Inhibitor-Positive Hemophilia A.Journal of hematology · 2024Article
- Reference Values for the Haemophilia Joint Health Score in Patients With Severe Haemophilia Derived From the Canadian Bleeding Disorder Registry.Haemophilia : the official journal of the World Federation of HemophiliaArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
14 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Background: The prevalence of hemophilia varies globally, with close to 100% of patients diagnosed in high-income countries and as low as 12% diagnosed in lower-income countries. These inequalities in the care of people with hemophilia exist across various care indicators. Objectives: This analysis aims to describe the clinical care outcomes of patients in the World Bleeding Disorders Registry (WBDR). Methods: In 2018, the World Federation of Hemophilia developed a global registry, the WBDR, to permit hemophilia treatment centers to collect clinical data, monitor patient care longitudinally, and identify gaps in management and treatment. Results: As of July 18, 2022, 10,276 people with hemophilia were enrolled from 87 hemophilia treatment centers in 40 countries. Nearly half (49%, Conclusion: Data reveal large treatment and care disparities between socioeconomic groups, showing improvements when prophylaxis is initiated to prevent bleeding. Overall, care provided in low-income countries lags behind high-income countries by up to 40 years. Limitations in the interpretation of data include risk of survival and selection bias.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.