This needs assessment in partnership with the Huntington Society of Canada investigated 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 were 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 answered 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 then collaboratively designed a national survey for people living with HD and their care partners to gather a breadth of data. To gather the perspectives of individuals and families affected by HD in identified hard-to-reach communities, we conducted in-person interviews and focus groups. Further, the data collection included 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 were 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 also presented findings and recommendations to the HSC and HSQ leadership teams and Board of Directors.