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Research Projects Funded in 2014

Living with and managing hemophilia from diagnosis and through key care transitions: The journey for families of children with hemophilia


Dr. Roberta Woodgate
University of Manitoba – Winnipeg, Manitoba
Second year funding

Co-investigator: Dr. Milena Pirnat

The purpose of this study is to arrive at an increased understanding of the experiences and needs of families of children with hemophilia as they learn to live with and manage hemophilia from diagnosis through other key care transitions. Thirty families will be recruited with the intent to involve parents as well as their children with hemophilia. Data collection methods include interviews combined with photovoice, which is a process that involves participants taking photographs to document their experiences. The significance of this innovative study is threefold.

First, this study will improve our understanding of the experiences and needs of families of children with hemophilia as they learn to live with and manage hemophilia from diagnosis through other key care transitions by listening to their voices. Second, children with hemophilia and their parents will have meaningful involvement and play an active role in defining issues, considering solutions, and identifying priorities specific to families of children with hemophilia. Third, the knowledge gleaned from this study may be used to inform and improve existing services and programs as well as develop new services and programs that are meant to enhance how families of children with hemophilia manage and deal with hemophilia.

HR-pQCT: a novel imaging technology detects microarchitectural skeletal pathology in hemophilia patients



Dr. Adrienne Lee
University of Calgary (Alberta)
First year funding

Co-investigators:
Dr. Man-Chiu Poon, University of Calgary
Dr. Steven Boyd, University of Calgary
Dr. Gregory Kline, University of Calgary

Comprehensive care of hemophilia patients has resulted in significant improvements in survival, preservation of joint function, and quality of life. Thus, the focus is now shifting to issues of the aging hemophilia patient. Osteoporosis is emerging as a unique concern in persons with hemophilia (PWH) and several studies demonstrate a significant proportion of PWH with low bone mineral density (BMD) developing at an early age. Low BMD predisposes to bone fractures, a consequence that would be difficult and expensive to manage in PWH due to the underlying bleeding disorder. Why hemophilia persons are developing low BMD is unclear since this is normally a disease of postmenopausal women. The goal of this project is to utilize a new imaging technology called HR-pQCT (high resolution peripheral quantitative computed tomography) that visualizes the bone structure in 3D. This information along with bone metabolism markers can tells us about bone strength, the changes in bone density, and potentially the reason why these changes occur in PWH. We hope the results of our study will help identify aging PWH individuals with bone quality deficits who are at risk of fracture and may benefit from early preventative measures.