Socialization of Adult Men With Congenital Hemophilia A or B: A Study to Examine Socialization Measures, the Role of Spouse/Significant Other and Health Related Quality of Life
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 voluntarily identified by the person with congenital bleeding disorder
for recruitment into the study.
For the adult men with congenital hemophilia A or B, the study involves a minimum of 2
visits and includes screening, medical history and physical exam review, completing
confidential questionnaires and interview.
Eligible men with congenital hemophilia A or B (person with congenital bleeding disorder,
PWCBD) are given the option to permit the investigator to contact their spouse or
significant other (SSO) for participation in the study. If PWCBD has an SSO, the SSO is not
required to participate in the study.
Spouse/significant other(SSO)of men with congenital hemophilia A or B may enter the study
only if they have been voluntarily identified by their partner (PWCBD) and their partner has
opted to allow investigator to contact them. For the SSO who chooses to participate in the
study, the study will involve a minimum of one visit and includes completing confidential
questionnaires and interview.
All participation including questionnaires and interview information collected is
confidential and protected by health privacy information laws and records are de-identified.
The study is sponsored by a grant from The National Hemophilia Foundation.
Observational Model: Cohort, Time Perspective: Prospective
Health related quality of life, description of support and networks.
Standard health-related quality of life questionnaires and interview are used to obtain primary outcome measure about PWCBD.
Judith C Lin, MD
Dana-Farber Cancer Institute
United States: Institutional Review Board
|Dana-Farber Cancer Institute||Boston, Massachusetts 02115|