The Neuromuscular Disease Network for Canada

The Canadian Institutes of Health Research (CIHR) have recently released an article outlining the results of their building the future of clinical trials consultation in a What We Heard report. The report summarizes the input from the 140 individuals, organizations, and groups of stakeholders who provided feedback, including a written consultation submitted by NMD4C and Muscular Dystrophy Canada (MDC) on behalf of the neuromuscular community.

The feedback outlined in the report will help inform the Clinical Trials Fund (CTF), a three-year, $250 million project to allow CIHR to develop and implement a long-term strategy to reinforce Canada’s clinical trials ecosystem as a part of the $2.2 billion Biomanufacturing and Life Sciences Strategy (BLSS) program announced in 2021.

This report is a result of the Building the future of clinical trials at the CIHR consultation process which sought input on how to address issues facing the Canadian clinical trials ecosystem in order to improve the clinical trials in Canada and inform a long-term CIHR clinical trials strategy.

Feedback from the clinical trials community

The What we Heard report summarizes the outcomes from this consultation in seven broad categories with themes related to identifying current gaps and barriers, potential innovations, and policy recommendations to support equity, diversity and inclusion, transparency, and research excellence in clinical trials. The full list of highlights is available in the full What We Heard Report from CIHR.

NMD4C and Muscular Dystrophy Canada recommendations

Providing equitable access to and strengthening the infrastructure for the Canadian neuromuscular clinical trial landscape continues to be a strategic priority for both the NMD4C and MDC. We are grateful to have the opportunity to engage with the CIHR to bring forward recommendations from the neuromuscular disease community to both identify and overcome gaps and challenges in the clinical trial landscape, and to help shape the long-term funding strategy for clinical trials research in Canada. It is encouraging to see the recommendations and highlights summarized in this report align with our consultation feedback, and in our continued work to understand and address barriers in attracting and facilitating neuromuscular clinical trials to Canada, and increasing involvement of Canadian sites within patient registries like the Canadian Neuromuscular Disease Registry and the Care and Trial Site Registry (CTSR).

We look forward to further updates on the long-term clinical trials strategy from the CIHR to support clinical trials research, training, and infrastructure in Canada.