Zimmerman Program for the Molecular and Clinical Biology of VWD
- Children’s Medical Center (Dallas, Plano, Southlake)
Janna Journeycake, M.D.
Patients who are either being evaluated for or have been identified as having VWD through the Comprehensive Center for Bleeding Disorders (CCBD) and, in some cases, the patients' families will be offered the opportunity of participating in this study. The preferred recruit would be an affected individual (usually the proband), both of that individual's parents, and any siblings or children of that affected proband. in some cases extended family members will be recruited, but only through the family's decision to discuss this with their relatives.
We expect to study 750-1500 individuals (probands and family members) at Children's Hospital of Wisconsin and an additional 2000-3000 individuals nationally. We will study children over the age of 2 and all ages of adults. in some circumstances, the clinician might be interested in knowing if there is VWD in your child who is less than 2 years old. if studies are being drawn for diagnostic purposes, we would draw some additional small samples during the same blood-draw so that research studies could be done and the routine testing performed but the payment would come from the research grant rather than the patient's or subject's insurance company.
in some instances, we might want to contact subjects to draw additional clinical and research samples for further testing. This additional VWD testing would first be in several months and then every other year (usually for a total of 1-3 times) to help us determine more accurately if they have VWD. This additional testing is very important for this study to help determine id a subject actually has VWD.
Patients who are being evaluated or have been evaluated and/or diagosed with VWD and their families are eligible to participate. Subjects under 2 years of age will be enrolled at the discretion of the clinician.