Dr. Paula James, from Queen’s University in Kingston and Dr. Michelle Sholzberg, from St. Michael’s Hospital in Toronto are the key researchers in a new study looking at the bleeding symptoms within families of hemophilia patients. The study, formally titled Reporting of Bleeding Symptoms within Families of Hemophilia Patients, aims to answer the following question:
Women who are carriers of hemophilia are historically thought to have no problems with bleeding. However, it is now estimated that over one-third of female carriers experience abnormal bleeding.
To study this more carefully, we plan to assess symptoms of bleeding in female hemophilia carriers and their female non-carrier relatives who have a male relative diagnosed with hemophilia A or B.
Want to Participate? Answer the Questions Below:
Here’s How We’ll Collect the Data
We’ll ask you some questions to make sure you are able and willing to participate and explain what’s involved. At this time, a date/time for the study interview will be arranged.
All participants will be contacted by phone and asked detailed questions about their bleeding history. Other required study information will be also attained at this time. This phone call should require no longer than 45 minutes.
Who Can Participate
- Females who are hemophilia A or B carriers and their female, non-carrier relatives within 15 years of age (i.e. siblings, aunt and niece, first cousins) who have a male relative diagnosed with hemophilia A or B.
- Over the age of 18 years.
- Participants must also be willing and able to give consent and answer questions about their medical history
- Meet other study requirements (will be assessed at first contact)
Approval for the study has to be obtained from the Queen’s University Health Sciences and Affiliated Hospitals Research Ethics Board and the St. Michael’s Hospital Research Ethics Board.
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