October 2024 Updates from the Canadian Neuromuscular Disease Registry

The Canadian Neuromuscular Disease Registry (CNDR) is pleased to share updates on several exciting initiatives this fall!

New Dataset in Facioscapulohumeral Muscular Dystrophy (FSHD): CNDR is preparing to imminently launch its basic dataset for FSHD.

  • This dataset was developed in collaboration with MDC, who contributed efforts in obtaining feedback from patients and clinicians.
  • Formation of the CNDR FSHD Working Group is in progress, which will be led by Dr. Charles Kassardijan.
  • Ethics has been approved at CNDR’s National Office and they will be distributing the FSHD dataset to CNDR-affiliated sites for local ethics approvals this fall.
  • CNDR has applied for a Platform Support Grant through Brain Canada with matched co-funding from the FSHD Canada Foundation. If the successful, this will fund 3 years of FSHD data collection at CNDR sites.
  • Timely launch of the FSHD dataset aims to ensure preparedness for any post-marketing opportunities that may arise in the future by allowing patients with FSHD to register and have their baseline characteristics in CNDR.

 

CIHR Burden of Disease grant

Preparatory work and REB approvals are in progress for work planned under a CIHR grant led by NMD4C investigator Dr. Reshma Amin, aimed at linking registry data with provincial databases, incorporating patient-reported outcomes, and launching two new disease datasets. The project will also involve the launch of two new disease datasets, namely OPMD and SBMA.

Oculopharyngeal Muscular Dystrophy (OPMD):

  • The OPMD dataset is pending finalization and REB approval and will be launched as part of this CIHR grant initiative. The OPMD module will be led by Dr. Cynthia Gagnon.

Spinal Bulbar Muscular Atrophy (SBMA): 

  • The SBMA dataset will be implemented as part of this CIHR grant initiative. The dataset and protocol have been developed led by Dr. Kerri Schellenberg and Dr. Gerry Pfeffer, who have engaged with Indigenous Community Guiding Circles to develop specific procedures for consenting and handling of patient data from Indigenous communities. Input from these conversations will be invaluable in development of CNDR policy to support considerations for EDI and Indigenous sovereignty in collection and analysis of patient data in CNDR.

CNDR PROMs Data Collection:

  • In conjunction with this CIHR grant initiative, plans are underway to amend CNDR ethics to incorporate the collection of Patient Reported Outcome Measures (PROMs) directly from patients for future studies, to be piloted over the next few years.
CNDR logo4x3

Read next...

Website - NMD 2026 Fellows

Announcing the 2026 Neuromuscular Clinical Fellowship Award Recipients

We are excited to share that the 2026 Neuromuscular Clinical Fellowship Awards have been awarded! These fellowships strengthen clinical training in neuromuscular medicine and help prepare the next generation of specialists who will advance neuromuscular care across Canada.

Website - 2025 Clinical Summer School - Website

NMD4C Launches Clinical Summer School

We are excited to announce our inaugural Clinical Summer School, happening in Ottawa, Ontario on September 10–11, 2025. The event will feature hands-on workshops designed to complement the NMD4C Royal College–accredited National Neuromuscular Lecture Series and foster engagement among fellows.

BIND Study - Financial Burden of Neuromuscular Disorders

New BIND Study Highlights Financial Burden of Neuromuscular Disorders 

Celebrating the Publication of the BIND Study.
We are delighted to share that the BIND study, “Financial Toxicity and Its Determinants in Individuals Living With Neuromuscular Diseases,” has been published in Neurology (2025). This is the first of its kind in Canada to document the true costs of living with neuromuscular diseases

NEWS Website Featured Images

National Training Standards Approved for AFC in Neuromuscular Medicine

We’re pleased to announce that the Royal College of Physicians and Surgeons of Canada has granted final approval for the National Training Standards for the Area of Focused Competence (AFC) in Neuromuscular Medicine!

NEWS_TRAINED

Expanding National Clinical Outcome Assessment Capacity with Train(e)d

NMD4C and MDC have launched Train(e)d. This initiative is part of NMD4C’s broader efforts to build national capacity in outcome measures and natural history research in support of consistent and high-quality clinical assessments across Canada.

Website Featured Image

Announcing the 2025 Collaborative Research Training Award Recipients!!!

We are excited to announce the recipients of the 2025 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.