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NCT01510418 · ClinicalTrials.gov registry record
Socialization of Adult Men With Congenital Hemophilia A or B
A clinical trial, sponsored by Dana-Farber Cancer Institute.
- Completed
- Registry status
- 27
- Enrollment target
NCT01510418: Completed study, sponsored by Dana-Farber Cancer Institute.
NCT01510418 is a clinical trial that has completed, run by Dana-Farber Cancer Institute. The registered enrollment target is 27 participants. According to ClinicalTrials.gov, the official US trial registry.
The verdict
NCT01510418 has completed, sponsored by Dana-Farber Cancer Institute.
- COMPLETED
- Registry status
- 27 participants
- Enrollment target
Study Summary
The goal of this pilot study is to understand the socialization of adult men with hemophilia living in the United States and their quality of life in order to improve comprehensive care for persons with congenital bleeding disorders. Studies in Europe suggest that despite medical, surgical, and biotechnology advances in care for persons with the congenital bleeding disorders hemophilia A and B, men with hemophilia have earlier work disability and health-related lower quality of life than men of the same age who do not have hemophilia in the general population. Congenital bleeding disorders are known to have medical and psychosocial impact not only in school but also in other activities, e.g. participation in sports beginning at a young age. The psychosocial impact of living with a congenital bleeding disorder has been studied and described in childhood. The support relationships in childhood include parents and primary family of origin and these supports are generally considered in pediatric comprehensive care models. Support relationships in adulthood have not been well described or studied. The role of spouse and significant others (SSO) of PWCBD in health care is of interest for the delivery of adult comprehensive care as well as to understand their contribution to the health-related quality of life of PWCBD. Additionally, this study seeks to learn of the impact of congenital bleeding disorders for the SSO. The study uses self-reported medical and social information questionnaires, health-related quality of life surveys, and confidential interview. Results of this study may guide how comprehensive care and support are provided to adult persons with congenital bleeding disorders by hemophilia treatment programs. This study focuses on PWCBD with hemophilia A or B as a model for the experience of persons with other congenital bleeding disorders.
Primary Outcome
Standard health-related quality of life questionnaires and interview are used to obtain primary outcome measure about PWCBD.
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 27 participants |
| Start Date | 2011-05 |
| Est. Completion | 2013-12 |
What the finished NCT01510418 record still lists
NCT01510418 is an observational study that tracks outcomes without assigning an intervention. The registry caps enrollment at 27 participants, a relatively small participant target.
The record links to 0 conditions, and to 0 interventions.
NCT01510418 does not publish any study locations in the registry export this page uses.
Frequently Asked Questions
What is clinical trial NCT01510418 about?
NCT01510418 is a clinical study titled "Socialization of Adult Men With Congenital Hemophilia A or B". The goal of this pilot study is to understand the socialization of adult men with hemophilia living in the United States and their quality of life in order to improve comprehensive care for persons with congenital bleeding disorders. Studies in Europe suggest that despite medical, surgical, and biot...
What is the current status of trial NCT01510418?
This trial is currently completed. The enrollment target is 27 participants. The study started on 2011-05. Estimated completion is 2013-12.
Who is sponsoring clinical trial NCT01510418?
This trial is sponsored by Dana-Farber Cancer Institute, which has 781 total clinical trials registered on ClinicalTrials.gov.
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