Learning to Live With Non-severe Haemophilia

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Trial Status Completed

Trial Identifier

NCT05314751

Condition

Hemophilia A, Hemophilia

The below information is taken directly from public registry websites such as ClinicalTrials.gov, EuClinicalTrials.eu, ISRCTN.com, etc. and has not been edited.

Trial Summary

While the burden of standard treatment may be reduced through the use of gene therapy, converting those with severe haemophilia to a mild or moderate phenotype, the long-term sequelae of previous joint bleeds and associated limitations imposed on those with severe haemophilia may not translate to lessen the biomedical burden of living with a history of severe haemophilia.

We wish to explore these issues further in the Learning to Live study. The study will also seek to identify the ongoing support needs of those who transition to a milder bleeding phenotype.

Eligibility Criteria

Birth Sex

Male

Age

16 Years to 100 Years

Healthy Volunteers

No

Drug/Treatment:

Questionnaire and interview

Study Type:

Observational

Number of Participants:

165

Study Started:

2022-12-21

Study Updated:

2024-03-13

Trial Locations

  • Oxford University Hospitals NHS Foundation Trust

    Oxford, Oxfordshire, United Kingdom

Inclusion Criteria

Confirmed diagnosis of haemophilia A or B of any severity

Exclusion Criteria

Diagnosis of any other bleeding disorde

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