The Neuromuscular Disease Network for Canada

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Treatabolome Project Designed to Shorten Diagnosis-to-Treatment Time for Patients with Rare Diseases

The NMD4C would like to share the publication of a special issue of the Journal of Neuromuscular Diseases dedicated to the Treatabolome, a new online database for rare disease and gene-specific treatment information. The special issue includes six systematic reviews contributed by experts on rare neurological disorders.

You can access the special issue of the Journal of Neuromuscular Disease here.

The Treatabolome project is a research initiative to develop a freely available, interoperable online platform dedicated to disseminating rare disease and gene-specific treatment information to healthcare professionals regardless of their level of specialized expertise. Developed under the Solve-RD European Research Project, it is intended to reduce treatment delays for patients with rare diseases by directly linking diagnosis and treatment information. This initiative is highly relevant to neuromuscular disorders as they are rare diseases by definition. In this special issue of the Journal of Neuromuscular Diseases, experts contribute Treatabolome-feeding systematic literature reviews on rare neurological and neuromuscular disorders.

Read more about the Treatabolome project here.

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Neuromuscular Research Funding Announcements From Jesse’s Journey and Muscular Dystrophy Canada

The NMD4C is excited to share recent grant funding announcements from two of our partners, Jesse’s Journey and Muscular Dystrophy Canada. Jesse’s Journey will grant $1.7M toward four promising research projects this year. Muscular Dystrophy Canada (MDC) will invest $400,000 towards seven new research projects through the MDC Neuromuscular Disorder (NMD) Research Grant Competition and through the European Joint Programme on Rare Diseases (EJP RD).

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Muscular Dystrophy Canada Announce Phase 2 of Newborn Screening Initiatives with Call for Funding Proposals

MDC is excited to launch Phase 2 of their work with a call for proposals for local newborn screening for SMA initiatives. It is anticipated that these projects will be led by labs or clinicians (or both) and should either focus on setting the lab up for testing or ensuring efficient uptake of policy (i.e., addition of SMA to existing provincial newborn screening panel).

EC Update

Early Career Working Group Update

the NDM4C has created a list of profiles for these members, where you can learn more about their research interests, publications, and where you can find them online. The NMD4C has also launched an early-career Slack channel, and are seeking early career member representation on our work packages.

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Read Dr. Louise Moyle’s Early Career Blog

Read the latest early career blog post, from NMD4C member Dr. Louise Moyle. 

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Jesse’s Journey Grants $1.7 Million to Duchenne Muscular Dystrophy Research

Jesse’s Journey, Canada’s leader in Duchenne muscular dystrophy funded research, will grant $1.7M toward four promising research projects this year.

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Introducing NMD4C Clinical Trial Concierge Bonnie Wooten

To facilitate the network’s Clinical Trial Coordination activities and to meet this demand, the NMD4C is excited to announce the hiring of Bonnie Wooten, who has joined the team in her role as the Clinical Trial Concierge. In her role, Bonnie will work with all stakeholders including clinicians, families, and industry.