EPCB Working Group Launches Patient Oriented Research Resources Tool
The NMD4C Expert Patient Capacity Building (EPCB) working group is thrilled to announce the launch of a Patient Oriented Research (POR) Resources Tool!
Curated by EPCB coordinator Patricia Mortenson with input from the entire group, this collection of online resources and websites was sourced primarily from organizations and centres across Canada, but includes some from across the world. These resources are for all stakeholders engaged in POR, including people affected by neuromuscular diseases, researchers, and advocates.
You can find the interactive tool on the NMD4C website here.
Canadians with neuromuscular diseases, their families, and advocates are increasingly asked to take an active role in research. Research and advocacy training empowers patients and ensures they have the confidence and knowledge needed to inform health care and research decisions. For researchers, patient engagement resources and training provide the tools to partner more successfully with patient-partners.
Working together, patients and researchers can achieve more.
Read more about the NMD4C’s work in training patients and research teams.
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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.
MICYRN Secures $20 Million Grant from CIHR for a Pediatric Rare Disease Clinical Trials and Treatment Network
The NMD4C are excited to share that MICYRN’s success in securing a $20 million grant from CIHR Institute of Genetics to support the development and execution of RareKids-CAN: Pediatric Rare Disease Clinical Trials and Treatment Network.