An observational study in Hemophilia A and Hemophilia B, sponsored by Weill Medical College of Cornell University. Completed at 19 sites in 2 countries. Open to female participants aged 1 Month and older. Per ClinicalTrials.gov, last updated 2012-12-10.
Sponsored by Weill Medical College of Cornell University · Observational
To collect and analyze data on females with hemophilia so as to better define the difference between the study population and the male population with hemophilia.
This study is designed as an epidemiological study with retrospective clinical and genetic data collection and prospective quality of life (QOL) data collections and genotyping of subjects without current molecular diagnosis. Data on the genetic/chromosomal etiology of the condition will be collected through chart review. For those subjects who have not had molecular or cytogenetic analysis, molecular and cytogenetic testing will be offered after genetic counseling. Those subjects who agree to have genetic testing will have 5-10 ml of blood drawn and sent to the cytogenetic laboratory at Weill Cornell Medical College for testing to determine the chromosomal complement, and 5 ml of blood sent to Dr. Arupa Ganguly at the University of Pennsylvania for the identification of a factor VIII or factor IX mutation, and X-chromosome inactivation studies.
885 studies on the registry are indexed under Hemophilia A; 139 are open to participants now.
This study's enrollment of 22 is below the median of 80 across 322 observational studies indexed under Hemophilia A.
Browse Hemophilia A studies →Weill Medical College of Cornell University is the lead sponsor of 890 studies on the registry; 164 are open to participants now.
Of its 123 completed or terminated interventional studies of FDA-regulated products, 94 (76%) have results posted.
Counted across the registry records on this site, refreshed daily.
Females with severe or moderate (less than 5%) hemophilia A or B.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
Females with severe or moderate Hemophilia A or B.
The prevalence of females with severe or moderate hemophilia A or B in the United States.
Time frame: Study Duration
Collect existing data on the genetic and/or chromosomal causes for severe and moderate hemophilia A and B in females in the United States.
Time frame: Study Duration
To determine the natural history of hemophilia in females by collecting and analyzing data on the symptoms, treatment patterns, and complications of hemophilia in this cohort.
Time frame: Study Duration
Collect and analyze data on the health-related quality of life and psychosocial adaptation to disease of females in the United States.
Time frame: Study Duration
This study is completed, as verified in Dec 2012. You cannot join it, but the record below documents what was studied.
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Weill Medical College of Cornell University →