Centers for Huntington Disease Care Needs Assessment

This needs assessment in partnership with the Huntington Society of Canada will investigate the unmet needs in Huntington disease (HD) related health care services across Canada, to better understand the needs of minority and hard-to-reach populations, and inform next steps in the development of multidisciplinary Centres for HD CARE (Clinical and Research Excellence).

The main research questions guiding the needs assessment are as follows: 

1. How is clinical care currently being accessed by people living with HD?

2. What are the challenges and gaps in care experienced in different Canadian cities, rural areas, and regions?

3. Based on the above, what considerations should shape the proposed Centres for HD CARE?

We will answer these questions through first a literature review, to establish what is already known about the state of relevant services in Canada and the proposed model of care. We will then collaboratively design a national survey for people living with HD and their care partners to gather a breadth of data. To gather the perspectives individuals and families affected by HD in identified hard-to-reach communities, we will conduct in-person interviews and focus groups. Further, the data collection will include virtual focus groups with staff and Board of both the Huntington Society of Canada (HSC) and the Huntington Society of Quebec (HSQ), interviews with multi-disciplinary care professionals, and interviews with potential funding partners.

Research findings will be synthesized in a full narrative report and in a summary report along with recommendations to guide the development of new Centres for HD CARE. We will also present findings and recommendations to the HSC and HSQ leadership teams and Board of Directors. We anticipate holding an online national forum for research participants and others interested in the HSC network to learn about the findings and discuss recommendations.