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Research Projects Funded in 2016

DDAVP vs exercise in patients with mild hemophilia A – which is better and do they work synergistically in improving hemostasis?

Dr. Manuel D. Carcao
Hospital for Sick Children – Toronto
First year funding (Start of project was delayed by one year)

Vanessa Bouskill, MN, RN(EC) Nurse Practitioner, Hospital for Sick Children – Toronto
Dr. Michelle Sholzberg, St. Michael’s Hospital – Toronto

To reduce the risk of bleeding, persons with hemophilia benefit from increasing their factor level in their blood. For persons with mild hemophilia A (MHA) this can be done by receiving DDAVP. DDAVP temporarily (≈12 hrs) increases the amount of FVIII in a person’s blood by shifting FVIII from sites of storage into the blood. DDAVP can be given as a nasal spray.

Our group showed that exercising for about 15 min on a stationary bicycle can increase FVIII in a similar way/extent as DDAVP. Thus exercise by itself may protect persons with MHA from bleeding and make taking DDAVP not necessary.

We wish to study this by testing 40 males (ages: 12-40) with MHA. They will be divided into two groups: Group 1 will receive DDAVP while Group 2 will undergo exercise. After that all subjects will have their blood rechecked. Then they will receive the other intervention to check if the combination of DDAVP plus exercise results in better clotting ability than just exercise or DDAVP alone.

We predict that exercise and DDAVP will result in similar effects on improving a person’s clotting ability. If successful the implications of our study will be that persons with MHA may not need to receive DDAVP but can feel reassured that they can exercise with less risk of bleeding provided that they appropriately warm up and thus raise their FVIII before engaging in sports activities that pose a risk of bleeding.

Outcomes indicators of transitional care in adolescents with hemophilia

Outcomes indicators of transitional care in adolescents with hemophilia: a Delphi survey of Canadian hemophilia care providers and patient focus groups

Dr. Haowei (Linda) Sun
University of British Columbia – Vancouver, British Columbia
First year funding

Dr. Vicky Breakey, McMaster University
Dr. Shannon Jackson, University of British Columbia
Dr. John Wu, University of British Columbia

Adolescents with chronic disease such as hemophilia face multiple challenges during transition from pediatric to adult care. There is a lack of studies evaluating the outcomes following transition in adolescents and young adults with hemophilia, hence it is unclear which outcomes are the best indicators of successful transition. A Delphi survey of Canadian hemophilia care providers and patient focus groups will be conducted to identify the most important and feasible clinical and patient-reported outcome indicators of effective transition. Results will lead to the development of a Hemophilia Transition Outcome instrument, which will help inform future studies evaluating the success of hemophilia transition.

Assessing the usability and user experience of the Canadian Bleeding Disorders Registry (CBDR) and MyCBDR

Prof. Nancy Heddle
McMaster University – Hamilton, Ontario
First year funding

Dr. Alfonso Iorio, McMaster University
Ms. Shannon Lane, McMaster University
Dr. Arun Keepanasseril, McMaster University
Ms. Theresa Almonte, Hamilton Health Sciences
Ms. Kay Decker, Hamilton Health Sciences

The Canadian Hemophilia Assessment and Resources Management Information System (CHARMS) was implemented across Canada in 2000 to help manage hemophilia and track coagulation factor concentrate use among patients. Over the years, the need for a more efficient and effective system became apparent. A new, web-based system, comprised of two components, the Canadian Bleeding Disorders Registry (CBDR) and MyCBDR, was introduced to replace CHARMS; it is being rolled out across the country. The ease of use and acceptability of this new system to Canadian end users (HTC staff, people with hemophilia and caregivers) is important and unknown. A study will be conducted to assess the usability and user experience of CBDR/MyCBDR. Participants will be invited to attend a “think aloud” session where they will complete a series of system tasks while describing what they are seeing, thinking and doing. The think aloud exercise will be followed by a brief interview and questionnaire. The assessment will be repeated three months later after the participant has had a chance to use the system in their usual setting to determine whether perceptions of ease of use change over time. This study will help identify any difficulties with the system.