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...
NMD4C Receive Excellence in Service Delivery Award and Network Investigators Honored as part of Muscular Dystrophy Canada’s 2024 Dr David Green Awards
We are excited to share that the NMD4C has been awarded the Excellence in Service Delivery Award, one of the annual Dr David Green Awards presented by Muscular Dystrophy Canada.
NMD4C Launch Canadian Neuromuscular Clinical Trial Network
We are thrilled to announce the launch of a Canadian neuromuscular clinical trial network (CTN) as a part of our clinical research work.
Training Session for Physiotherapists and Occupational Therapists on Outcome Measures in Spinal muscular atrophy hosted by Quebec SMA Network
This past March 23, the Quebec SMA Network (Réseau québécois de l’amyotrophie spinale – RQAS) in collaboration with the NMD4C and Muscular Dystrophy Canada (MDC) hosted an interactive training session for French-speaking physiotherapists and occupational therapists on assessment measures and practices for Spinal muscular atrophy (SMA). This training gathered clinicians to train and discuss SMA standardized outcome measures and work through current problems/challenges, to improve how these measures often tied to drug reimbursement are conducted.
MDC Announce Recipients of 2024 Neuromuscular Clinical and Translational Research Grants
Muscular Dystrophy Canada (MDC) recently announced the recipients of its annual Neuromuscular Research Grants competition. Through these grants, MDC is investing $900,000 into clinical and translational research projects.
SMA Outcome Measures Training for Physiotherapists and Occupational Therapists
To support the development and training on validated NMD outcome measures we are pleased to provide opportunities for physiotherapists and occupational therapists to attend training sessions for outcome measures.
Congratulations to the 2024 NMD4C Early Career Awards Recipients
We are excited to announce the recipients of the 2024 NMD4C Early Career Awards! This is the second year of our annual award program, celebrating excellence and contribution to the neuromuscular field from early career investigators across both clinical and basic science streams.