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Hemophilia B

Rare and Inherited Diseases · NLM MeSH · updated 2026-10-29 · version 1

Citations verified against PubMedNot yet clinician-reviewed10 referencesApproximately 5 min read

A deficiency of blood coagulation factor IX inherited as an X-linked disorder.

Table of Contents

1. Definition2. Research landscape3. Reading the evidence4. Open-access studies5. Key reviews6. References7. About this article

Definition and research guide

This page combines a MeSH definition, publication statistics and selected research abstracts. It is a starting point for reading the literature, not a medical textbook or a systematic evidence review.

Content available: 4 complete abstracts (974 words), 10 references. Full article text is not stored or reproduced here; follow the PMID, DOI or PMC links to read the original sources and their access terms.

Definition

A deficiency of blood coagulation factor IX inherited as an X-linked disorder. (Also known as Christmas Disease, after the first patient studied in detail, not the holy day.) Historical and clinical features resemble those in classic hemophilia (hemophilia A), but patients present with fewer symptoms. Severity of bleeding is usually similar in members of a single family. Many patients are asymptomatic until the hemostatic system is stressed by surgery or trauma. Treatment is similar to that for hemophilia A. (From Cecil Textbook of Medicine, 19th ed, p1008)

Definition: NLM Medical Subject Headings (MeSH) scope note (Public domain (U.S. National Library of Medicine); attribution requested). View the MeSH record.

Also known as: Bs, Hemophilia; Hemophilia Bs; Christmas Disease; Disease, Christmas; Deficiency, Factor IX; Deficiencies, Factor IX; Factor IX Deficiencies; Factor IX Deficiency.

Where it fits in the MeSH classification

Broader topics
Blood Coagulation Disorders, Inherited; Coagulation Protein Disorders; Hemorrhagic Disorders; Genetic Diseases, X-Linked
See also
Hemophilia A

Related concepts

  • Hemophilia A

Research landscape

PubMed indexes 5,034 records tagged with the MeSH heading “Hemophilia B” (counts retrieved 2026-10-29). 672 of them (13.3%) were published from 2020 onward, and the busiest period so far is through 1999 with 2,157 records.

Reviews account for 832 records (16.5%) and meta-analyses for 23. Randomized controlled trials number 47 (0.9%) as a share of all records on the topic. Randomized trials make up only a small share of this literature, so much of what is known comes from laboratory, observational or descriptive work.

PubMed records by publication periodthrough 1999: 2,157 records; 2000-2009: 870 records; 2010-2019: 1,335 records; 2020 onward: 672 records2,157through 19998702000-20091,3352010-20196722020 onward
Records in PubMed indexed with this heading, by publication period. Real counts from NCBI E-utilities; the final period covers only part of the current year. Volume reflects how much has been published, not how strong the evidence is.
Show the data
PeriodRecords
through 19992,157
2000-2009870
2010-20191,335
2020 onward672
Share of records by publication typeReviews: 16.5 percent; Meta-analyses: 0.5 percent; Randomized controlled trials: 0.9 percentReviews16.5% (832)Meta-analyses0.5% (23)Randomized controlled trials0.9% (47)
Share of all PubMed records on this heading that carry each publication type. Types overlap with other records, so the shares do not sum to 100%.
Publication-type chart data
Publication types among 5,034 PubMed records
TypeRecordsShare
Reviews83216.5%
Meta-analyses230.5%
Randomized controlled trials470.9%

Method: PubMed query "Hemophilia B"[MeSH Terms] with publication-type and date filters, retrieved 2026-10-29.

Reading the evidence in rare and inherited diseases

Rare conditions are difficult to study: few patients means small studies, case reports and registries are common, and randomized trials are the exception. Small samples limit precision and can exaggerate effects, and cases reported in the literature may be the most severe or unusual. Evidence from many small studies is best read together. Check how patients were identified, how many were included and how long they were followed.

Evidence from open-access studies

These open-access studies come from PubMed’s best-match results for this heading (papers whose main topic it is), ranked here by citation count, with one recent addition. Each abstract is reproduced in full under its recorded open licence so that you can read the authors’ own words. They illustrate the literature; they are not a systematic summary of it. Citation counts measure attention, not reliability or clinical benefit.

Study comparison — selected abstracts, not a systematic review
Study / authorsYearSource label / designEurope PMC citationsLicence / source
CRISPR/Cas9-mediated genome editing via postnatal administration of AAV vector cures haemophilia B mice
Ohmori T, Nagao Y, Mizukami H, Sakata A, Muramatsu SI, Ozawa K, et al.
2017Research article
Design not recorded in structured metadata
116cc by
PMID 28646206 · DOI · PMC5482879
How to discuss gene therapy for haemophilia? A patient and physician perspective
Miesbach W, O'Mahony B, Key NS, Makris M
2019Review article
Design not recorded in structured metadata
69cc by
PMID 31115117 · DOI · PMC6852207
Sustained Clinical Benefit of AAV Gene Therapy in Severe Hemophilia B
Reiss UM, Davidoff AM, Tuddenham EGD, Chowdary P, McIntosh J, Muczynski V, et al.
2025Research article
Design not recorded in structured metadata
59cc by
PMID 40499172 · DOI · PMC7617823
Balancing Promise and Peril: Hemophilia Gene Therapy Insights
Akula S, Borroni E, Cottonaro A, Follenzi A, Merlin S
2026Review article
Design not recorded in structured metadata
1cc by
PMID 41549917 · DOI · PMC12813738

CRISPR/Cas9-mediated genome editing via postnatal administration of AAV vector cures haemophilia B mice [1]

Research article Ohmori T, Nagao Y, Mizukami H, Sakata A, Muramatsu SI, Ozawa K, et al. · · 2017 · cited 116 times (Europe PMC)

Abstract reading summary — source excerpts
Opening excerpt
Haemophilia B, a congenital haemorrhagic disease caused by mutations in coagulation factor IX gene (F9), is considered an appropriate target for genome editing technology.
Closing excerpt
Our results suggest that CRISPR/Cas9-mediated genome editing using an AAV8 vector provides a flexible approach to induce DSB at target genes in hepatocytes and could be a good strategy for haemophilia gene therapy.
Interpretation limits
Verbatim excerpts from the authors’ abstract; the closing excerpt may describe a finding, limitation or recommendation. Design, population, effect size and uncertainty have not been independently extracted or appraised. Read the complete abstract and linked paper before interpreting the findings.
Read complete abstract (192 words)

Haemophilia B, a congenital haemorrhagic disease caused by mutations in coagulation factor IX gene (F9), is considered an appropriate target for genome editing technology. Here, we describe treatment strategies for haemophilia B mice using the clustered regularly interspaced short palindromic repeat (CRISPR)/Cas9 system. Administration of adeno-associated virus (AAV) 8 vector harbouring Staphylococcus aureus Cas9 (SaCas9) and single guide RNA (sgRNA) to wild-type adult mice induced a double-strand break (DSB) at the target site of F9 in hepatocytes, sufficiently developing haemophilia B. Mutation-specific gene editing by simultaneous induction of homology-directed repair (HDR) sufficiently increased FIX levels to correct the disease phenotype. Insertion of F9 cDNA into the intron more efficiently restored haemostasis via both processes of non-homologous end-joining (NHEJ) and HDR following DSB. Notably, these therapies also cured neonate mice with haemophilia, which cannot be achieved with conventional gene therapy with AAV vector. Ongoing haemophilia therapy targeting the antithrombin gene with antisense oligonucleotide could be replaced by SaCas9/sgRNA-expressing AAV8 vector. Our results suggest that CRISPR/Cas9-mediated genome editing using an AAV8 vector provides a flexible approach to induce DSB at target genes in hepatocytes and could be a good strategy for haemophilia gene therapy.

Abstract reproduced from the open-access article under the recorded cc by licence; © the authors. PMID 28646206 · DOI · PMC5482879

How to discuss gene therapy for haemophilia? A patient and physician perspective [2]

Review article Miesbach W, O'Mahony B, Key NS, Makris M · · 2019 · cited 69 times (Europe PMC)

Abstract reading summary — source excerpts
Opening excerpt
Gene therapy has the potential to revolutionise treatment for patients with haemophilia and is close to entering clinical practice.
Closing excerpt
Given the expanding evidence base, both physicians and patients will need sources of clear and reliable information to be able to discuss and judge the risks and benefits of treatment.
Interpretation limits
Verbatim excerpts from the authors’ abstract; the closing excerpt may describe a finding, limitation or recommendation. Design, population, effect size and uncertainty have not been independently extracted or appraised. Read the complete abstract and linked paper before interpreting the findings.
Read complete abstract (212 words)

Gene therapy has the potential to revolutionise treatment for patients with haemophilia and is close to entering clinical practice. While factor concentrates have improved outcomes, individuals still face a lifetime of injections, pain, progressive joint damage, the potential for inhibitor development and impaired quality of life. Recently published studies in adeno-associated viral (AAV) vector-mediated gene therapy have demonstrated improvement in endogenous factor levels over sustained periods, significant reduction in annualised bleed rates, lower exogenous factor usage and thus far a positive safety profile. In making the shared decision to proceed with gene therapy for haemophilia, physicians should make it clear that research is ongoing and that there are remaining evidence gaps, such as long-term safety profiles and duration of treatment effect. The eligibility criteria for gene therapy trials mean that key patient groups may be excluded, eg children/adolescents, those with liver or kidney dysfunction and those with a prior history of factor inhibitors or pre-existing neutralising AAV antibodies. Gene therapy offers a life-changing opportunity for patients to reduce their bleeding risk while also reducing or abrogating the need for exogenous factor administration. Given the expanding evidence base, both physicians and patients will need sources of clear and reliable information to be able to discuss and judge the risks and benefits of treatment.

Abstract reproduced from the open-access article under the recorded cc by licence; © the authors. PMID 31115117 · DOI · PMC6852207

Sustained Clinical Benefit of AAV Gene Therapy in Severe Hemophilia B [3]

Research article Reiss UM, Davidoff AM, Tuddenham EGD, Chowdary P, McIntosh J, Muczynski V, et al. · · 2025 · cited 59 times (Europe PMC)

Abstract reading summary — source excerpts
Opening excerpt
BackgroundAdeno-associated virus (AAV)-mediated gene therapy has emerged as a promising treatment for hemophilia B.
Closing excerpt
).
Interpretation limits
Verbatim excerpts from the authors’ abstract; the closing excerpt may describe a finding, limitation or recommendation. Design, population, effect size and uncertainty have not been independently extracted or appraised. Read the complete abstract and linked paper before interpreting the findings.
Read complete abstract (372 words)

BackgroundAdeno-associated virus (AAV)-mediated gene therapy has emerged as a promising treatment for hemophilia B. Data on safety and durability from 13 years of follow-up in a cohort of patients who had been successfully treated with scAAV2/8-LP1-hFIXco gene therapy are now available.MethodsTen men with severe hemophilia B received a single intravenous infusion of the scAAV2/8-LP1-hFIXco vector in one of three dose groups (low-dose: 2×1011 vector genomes [vg] per kilogram of body weight [in two participants]; intermediate-dose: 6×1011 vg per kilogram [in two]; or high-dose: 2×1012 vg per kilogram [in six]). Efficacy outcomes included factor IX activity, the annualized bleeding rate, and factor IX concentrate use. Safety assessments included clinical events, liver function, and imaging.ResultsParticipants were followed for a median of 13.0 years (range, 11.1 to 13.8). Factor IX activity remained stable across the dose cohorts, with mean factor IX levels of 1.7 IU per deciliter in the low-dose group, 2.3 IU per deciliter in the intermediate-dose group, and 4.8 IU per deciliter in the high-dose group. Seven of the 10 participants did not receive prophylaxis. The median annualized bleeding rate decreased from 14.0 episodes (interquartile range, 12.0 to 21.5) to 1.5 episodes (interquartile range, 0.7 to 2.2), which represented a reduction by a factor of 9.7. Use of factor IX concentrate decreased by a factor of 12.4 (interquartile range, 2.2 to 27.1). A total of 15 vector-related adverse events occurred, primarily transient elevations in aminotransferase levels. Factor IX inhibitor, thrombosis, or chronic liver injury did not develop in any participant. Two cancers were identified but were deemed by the investigators, together with an expert multidisciplinary team, as being unrelated to the vector. A liver biopsy that was conducted in 1 participant 10 years after the infusion revealed transcriptionally active transgene expression in hepatocytes without fibrosis or dysplasia. Levels of neutralizing antibodies to AAV8 remained high throughout follow-up, thus indicating potential barriers to readministration of the vector.ConclusionsA single administration of scAAV2/8-LP1-hFIXco gene therapy resulted in durable factor IX expression, sustained clinical benefit, and no late-onset safety concerns over a period of 13 years. These data support the long-term efficacy and safety of AAV gene therapy for severe hemophilia B. (Funded by the U.K. Medical Research Council and others; ClinicalTrials.gov number, NCT00979238; EudraCT number, 2005-005711-17.).

Abstract reproduced from the open-access article under the recorded cc by licence; © the authors. PMID 40499172 · DOI · PMC7617823

Balancing Promise and Peril: Hemophilia Gene Therapy Insights [4]

Review article Akula S, Borroni E, Cottonaro A, Follenzi A, Merlin S · · 2026 · cited 1 times (Europe PMC)

Abstract reading summary — source excerpts
Opening excerpt
Hemophilia is an inherited disorder characterized by impaired blood clotting caused by mutations in the genes responsible for producing coagulation factor (F) VIII (hemophilia A, HA) or FIX (hemophilia B, HB).
Closing excerpt
This review synthesizes findings from clinical trials, addresses persistent challenges in hemophilia gene therapy, and underscores the biological constraints and limitations inherent to viral vector-based approaches.
Interpretation limits
Verbatim excerpts from the authors’ abstract; the closing excerpt may describe a finding, limitation or recommendation. Design, population, effect size and uncertainty have not been independently extracted or appraised. Read the complete abstract and linked paper before interpreting the findings.
Read complete abstract (198 words)

Hemophilia is an inherited disorder characterized by impaired blood clotting caused by mutations in the genes responsible for producing coagulation factor (F) VIII (hemophilia A, HA) or FIX (hemophilia B, HB). Current treatment primarily relies on replacement therapy, involving frequent and costly infusions of FVIII or FIX concentrates. While effective, these treatments come with the risk of developing neutralizing antibodies (inhibitors) against the infused factor. In recent years, non-factor replacement therapies have emerged as innovative treatment options, offering enhanced efficacy especially for patients with inhibitors. Despite their advantages, these approaches still fall short of providing a definitive, long-term cure. Since hemophilia is a monogenic disease, it presents an excellent opportunity for cell and gene therapy approaches aimed at achieving durable treatment and potentially a cure. Over the past three decades, remarkable advancements have been made in hemophilia gene therapy, culminating in the approval of Valoctocogene roxaparvovec (ROCTAVIAN, AAV-FVIII) and Etranacogene dezaparvovec (HEMGENIX, AAV-FIX) for patients with severe HA and HB, respectively. Nevertheless, gene therapy poses questions regarding its long-term efficacy and safety. This review synthesizes findings from clinical trials, addresses persistent challenges in hemophilia gene therapy, and underscores the biological constraints and limitations inherent to viral vector-based approaches.

Abstract reproduced from the open-access article under the recorded cc by licence; © the authors. PMID 41549917 · DOI · PMC12813738

Key reviews and meta-analyses

The most cited review-type papers among PubMed’s best-match results for this heading, listed with bibliographic details only. Follow the links for the full text and access terms.

  • Research article Definitions in hemophilia: communication from the SSC of the ISTH [5]
    Blanchette VS, Key NS, Ljung LR, Manco-Johnson MJ, van den Berg HM, Srivastava A, et al. · J Thromb Haemost · 2014 · cited 581 times (Europe PMC)
  • Research article Haemophilias A and B [6]
    Bolton-Maggs PH, Pasi KJ · Lancet · 2003 · cited 555 times (Europe PMC)
  • Research article The past and future of haemophilia: diagnosis, treatments, and its complications [7]
    Peyvandi F, Garagiola I, Young G · Lancet · 2016 · cited 356 times (Europe PMC)
  • Research article Inhibitor development in haemophilia B: an orphan disease in need of attention [8]
    DiMichele D · Br J Haematol · 2007 · cited 176 times (Europe PMC)
  • Research article Hemophilia A and B: molecular and clinical similarities and differences [9]
    Castaman G, Matino D · Haematologica · 2019 · cited 159 times (Europe PMC)
  • Research article Update on clinical gene therapy for hemophilia [10]
    Perrin GQ, Herzog RW, Markusic DM · Blood · 2019 · cited 136 times (Europe PMC)

References

  1. Ohmori T, Nagao Y, Mizukami H, Sakata A, Muramatsu SI, Ozawa K, et al.. CRISPR/Cas9-mediated genome editing via postnatal administration of AAV vector cures haemophilia B mice. . 2017. PMID 28646206 · DOI · PMC5482879
  2. Miesbach W, O'Mahony B, Key NS, Makris M. How to discuss gene therapy for haemophilia? A patient and physician perspective. . 2019. PMID 31115117 · DOI · PMC6852207
  3. Reiss UM, Davidoff AM, Tuddenham EGD, Chowdary P, McIntosh J, Muczynski V, et al.. Sustained Clinical Benefit of AAV Gene Therapy in Severe Hemophilia B. . 2025. PMID 40499172 · DOI · PMC7617823
  4. Akula S, Borroni E, Cottonaro A, Follenzi A, Merlin S. Balancing Promise and Peril: Hemophilia Gene Therapy Insights. . 2026. PMID 41549917 · DOI · PMC12813738
  5. Blanchette VS, Key NS, Ljung LR, Manco-Johnson MJ, van den Berg HM, Srivastava A, et al.. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost. 2014. PMID 25059285 · DOI
  6. Bolton-Maggs PH, Pasi KJ. Haemophilias A and B. Lancet. 2003. PMID 12781551 · DOI
  7. Peyvandi F, Garagiola I, Young G. The past and future of haemophilia: diagnosis, treatments, and its complications. Lancet. 2016. PMID 26897598 · DOI
  8. DiMichele D. Inhibitor development in haemophilia B: an orphan disease in need of attention. Br J Haematol. 2007. PMID 17614818 · DOI
  9. Castaman G, Matino D. Hemophilia A and B: molecular and clinical similarities and differences. Haematologica. 2019. PMID 31399527 · DOI · PMC6717582
  10. Perrin GQ, Herzog RW, Markusic DM. Update on clinical gene therapy for hemophilia. Blood. 2019. PMID 30559260 · DOI · PMC6356985

About this article

Sources
NLM Medical Subject Headings (definition, synonyms); NCBI PubMed (counts, identifiers); Europe PMC (open-access abstracts and citation counts).
Verification
Every reference was resolved against PubMed on 2026-10-31; title, year and DOI matched.
Review state
automated source verified; no human expert review has been recorded yet.
Version
1, last updated 2026-10-29.

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At a glance

5,034
PubMed records on this heading
13%
published since 2020
832
review articles
47
randomized trials
10
verified references below

Counts come from PubMed on 2026-10-29; they show how much has been written, not how strong the evidence is.

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