Investigator Dr. Maryam Oskoui Receives CIHR Grant to Fund Spinal Muscular Atrophy Clinical Trial
NMD4C investigator Dr. Maryam Oskoui has been awarded a Canadian Institutes of Health Research Clinical Trials Operating Grant ($1,777,095) for INFORM SMA as nominated principal applicant. Several NMD4C members are listed on this grant as co-investigators, including Katrina Cardiff, Shaainthabie Karthigesu, Dr. Kathryn Selby, Dr. Jean Mah, Dr. Heran Gonorazky, Dr. Hugh McMillan, Dr. Jordan Sheriko, Dr. Victoria Hodgkinson, and Dr. Lawrence Korngut; and as collaborators, including Niamh Cushen, Catherine Desautels, Dr. James Dowling, Monique Emond, Stacey Lintern, Sarah Turgeon-Desilets, Susi Vander Wyk, and Angelina Woof.
INFORM SMA
INFORM SMA is embedded in the INFORM RARE network, whose vision is to improve health care for children with rare genetic diseases by generating real-world evidence to support decision-making about new and existing therapies. The goal of this trial is to evaluate the effectiveness of a home-based exergame intervention in promoting physical activity for children and youth with Spinal muscular atrophy (SMA) while validating digital outcome measures. Multiple knowledge users (patients, parents, healthcare providers, and researchers) have informed the design of both the exergame intervention and the trial. This registry-based trial will also identify the best tools to measure meaningful change in this population and provide the framework for future pragmatic trials in SMA.
CIHR recently featured Dr. Oskoui’s innovative trial in their “Faces of Health Research” initiative. Read the full feature to learn more!
Links
1. https://cihr-irsc.gc.ca/e/53357.html?filter=Maryam+Oskoui
2. https://www.informrare.ca/
Read next...
Save the Date: 2027 NMD4C-RARE.Qc Basic Science Research Summer School
NMD4C and RARE.Qc are pleased to announce the 2027 NMD4C–RARE.Qc Basic Science Research Summer School, will take place May 12-14, 2027, at the Université du Québec à Trois-Rivières (UQTR). The Summer School will bring together graduate students, postdoctoral fellows, and early-career researchers for hands-on training workshops, scientific lectures, trainee presentations, networking opportunities, and engagement with leading experts in neuromuscular and rare disease research.
Now Open: 2027 Postdoctoral Research Fellowship Funding Competition
Deadline: Oct 14 2026 | We are happy to announce that applications for the 2027 Postdoctoral Research Fellowship Funding Competition, in partnership with Muscular Dystrophy Canada, is now open. This annual funding competition awards salary support to early-career scientists in interested in advancing their postdoctoral studies in neuromuscular disease (NMD) research.
Congratulations to our 2026 Collaborative Research Training Award Recipients!!!
We are excited to announce the recipients of the 2026 NMD4C Collaborative Research Training Awards, which supports Canadian trainees in their efforts to advance neuromuscular disease research while strengthening national collaboration among neuromuscular research laboratories.