Evidence map›Paper›PMID 36920863›Full record

ArticleExpert review of hematology2023

Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities in health services; diversity, equity, and inclusion; and implementation science.

Vanessa R Byams, Judith R Baker, Cindy Bailey, Nathan T Connell, Melissa S Creary, Randall G Curtis, Alexis Dinno, Christine J Guelcher, Michelle Kim, Roshni Kulkarni and 10 more

Open access · hybridAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Expert review of hematology, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.

0numbers the graph read from it
0cells of the map it votes in
11citing papers in PubMed
6.4field-weighted citation impact, top 3% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

11 citing papers in PubMed, 22 citations in OpenAlex.

  1. Social vulnerability, access to care, and outcomes in hemophilia.Blood vessels, thrombosis & hemostasis · 2026
    Article
  2. Hemophilia's Overlooked Female Face.Journal of clinical medicine · 2026
    Review
  3. The Bleeding Disorders Research Collaborative.Blood vessels, thrombosis & hemostasis · 2025
    Review
  4. Review
  5. Review
  6. Contemporary approaches to treat people with hemophilia: what's new and what's not?Research and practice in thrombosis and haemostasis · 2025
    Review
  7. Review
  8. The imperative to prevent joint bleeding in everyone living with hemophilia.Research and practice in thrombosis and haemostasis · 2024
    Article
  9. Article
  10. Article
  11. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

20 authors at 16 institutions in 4 countries.

Vanessa R ByamsDivision of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia, USA.ORCID 0000-0002-7700-2667
Judith R BakerCenter for Inherited Blood Disorders, Western States Regional Hemophilia Network, Orange, California, USA.ORCID 0000-0002-7850-0027
Cindy BaileyLos Angeles Orthopaedic Hemophilia Treatment Center, Los Angeles, California, USA.
Nathan T ConnellBoston Hemophilia Center, Division of Hematology, Department of Medicine, Brigham and Women's Hospital, Boston, Massachusetts, USA.ORCID 0000-0003-4100-7826
Melissa S CrearyAmerican Thrombosis and Hemostasis Network, Rochester, New York, USA.ORCID 0000-0001-7904-3377
Randall G CurtisHematology Utilization Group Study (HUGS), University of Southern California, Los Angeles, California, USA.ORCID 0000-0002-6859-6432
Alexis DinnoThe Oregon Health & Science University-Portland State University School of Public Health, Portland, Oregon, USA.
Christine J GuelcherHemostasis and Thrombosis Program, Children's National Hospital, Washington, DC, USA.ORCID 0000-0001-9226-2347
Michelle KimHemophilia Foundation of Southern California, Pasadena, California, USA.
Roshni KulkarniMSU Center of Bleeding and Clotting Disorders, Department Pediatrics and Human Development, Michigan State University, East Lansing, Michigan, USA.ORCID 0000-0001-9372-3184
Susan LattimoreDepartment of Pediatrics, Oregon Health & Science University, Portland, Oregon, USA.ORCID 0000-0001-6110-0257
Keri L NorrisNational Hemophilia Foundation, New York, New York, USA.
Lucy RamirezRush Hemophilia and Thrombophilia Treatment Center, Rush University Medical Center, Chicago, Illinois, USA.
Mark W SkinnerInstitute for Policy Advancement, Washington, DC, USA.ORCID 0000-0002-0934-0680
Susan SymingtonGenentech, Phoenix, Arizona, USA.
Patricia TobaseUniversity of California San Francisco Hemophilia Treatment Center, University of California San Francisco, San Francisco, California, USA.
Esmeralda VázquezPatient Author, Lived Experience Expert, Chicago, Illinois, USA.
Beth B WarrenDepartment of Pediatrics, University of Colorado School of Medicine, Aurora, Colorado, USA.ORCID 0000-0003-4416-3031
Emily WheatDepartment of Pediatrics, University of Colorado School of Medicine, Aurora, Colorado, USA.
Tyler W BucknerHemophilia and Thrombosis Center, Division of Hematology, University of Colorado School of Medicine, Aurora, Colorado, USA.ORCID 0000-0003-1954-4385
University of Colorado Denver · USNational Hemophilia Foundation · USAmerican Association For The Advancement of Science · USBrigham and Women's Hospital · USCenters for Disease Control and Prevention · USChildren's National · USExpert System (Italy) · ITHemophilia Center of Western Pennsylvania · USMichigan State University · USOregon Health & Science University · USOrthopaedic Hospital · USPortland State University · USRush University Medical Center · USUniversity of California, San Francisco · USUniversity of Michigan · USUniversity of Southern California · US

Funding

Intramural CDC HHS CC999999
6 · The paper itself

Abstract

backgroundThe National Hemophilia Foundation (NHF) conducted extensive all-stakeholder inherited bleeding disorder (BD) community consultations to inform a blueprint for future research. Sustaining and expanding the specialized and comprehensive Hemophilia Treatment Center care model, to better serve all people with inherited BDs (PWIBD), and increasing equitable access to optimal health emerged as top priorities. RESEARCH DESIGN AND

methodsNHF, with the American Thrombosis and Hemostasis Network (ATHN), convened multidisciplinary expert working groups (WG) to distill priority research initiatives from consultation findings. WG5 was charged with prioritizing health services research (HSR); diversity, equity, and inclusion (DEI); and implementation science (IS) research initiatives to advance community-identified priorities.

resultsWG5 identified multiple priority research themes and initiatives essential to capitalizing on this potential. Formative studies using qualitative and mixed methods approaches should be conducted to characterize issues and meaningfully investigate interventions. Investment in HSR, DEI and IS education, training, and workforce development are vital.

conclusionsAn enormous amount of work is required in the areas of HSR, DEI, and IS, which have received inadequate attention in inherited BDs. This research has great potential to evolve the experiences of PWIBD, deliver transformational community-based care, and advance health equity.

Indexed as

Hemophilia ADiversity, Equity, InclusionHealth ServicesHumansImplementation ScienceResearchUnited StatesCommunity-based participatory researchdiversityequityHealth equityHealth services researchImplementation scienceinclusionInherited bleeding disordersNational Hemophilia FoundationPublic health

Identifiers

PMID36920863
PMCPMC11075128
OpenAlexW4324311538

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

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.