Status:
COMPLETED
Socialization of Adult Men With Congenital Hemophilia A or B
Lead Sponsor:
Dana-Farber Cancer Institute
Collaborating Sponsors:
Brigham and Women's Hospital
Conditions:
Hemophilia A
Hemophilia B
Eligibility:
All Genders
21+ years
Brief 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 wi...
Detailed Description
There are two groups (cohorts) in this study. One group is adult men with congenital hemophilia A or B who qualify for the study. The other group is their spouse or significant other (SSO) who are vol...
Eligibility Criteria
Inclusion
- Eligibility criteria for person with congenital bleeding disorder(PWCBD, men with congenital hemophilia):
- Known diagnosis of congenital hemophilia A or B with or without inhibitor (defined by a plasma factor VIII or factor IX level below lower limits of normal and medical history consistent with diagnosis).
- Male age 21 years or older
- Willing to indicate if they have a spouse or significant other.
- Able to read, write and participate in interview on site.
- Exclusion Criteria for PWCBD:
- Other bleeding disorder besides congenital hemophilia A or B
- Eligibility criteria for spouses/significant other (SSO) participants in the study:
- A person in a relationship for a minimum of 9 months with the PWCBD participating in the study.
- PWCBD partner must be participating in the study.
- Willing to participate in questionnaire and interview on site.
- Exclusion criteria for SSO:
- \- Biologically related to PWCBD participant (that is, not a parent, sibling, child or other biologically-related caregiver).
Exclusion
Key Trial Info
Start Date :
May 1 2011
Trial Type :
OBSERVATIONAL
Allocation :
ACTUAL
End Date :
December 1 2013
Estimated Enrollment :
27 Patients enrolled
Trial Details
Trial ID
NCT01510418
Start Date
May 1 2011
End Date
December 1 2013
Last Update
August 3 2016
Active Locations (1)
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1
Dana-Farber Cancer Institute
Boston, Massachusetts, United States, 02215