Registries | CNDR

CNDR Registries

There are many different types of neuromuscular diseases, and the CNDR serves as a national umbrella registry for all of them. In addition to this broad registry, CNDR also maintains disease-specific registries for certain conditions, and continues to expand these over time.

Every registration matters. Even if a disease-specific registry is not yet available for your condition, you can still register with CNDR.

From Registration to Impact

Enrollment

People living with neuromuscular diseases can choose to register with the CNDR through a secure consent process, either at their local neuromuscular clinic, or online from home.

Data Collection

After you provide consent, the CNDR works with your neuromuscular clinic to collect standardized health information over time. Your information is combined with data from others living with the same condition to help build a clearer picture of real-world experiences. There are no ongoing tasks required from you. Your clinic team and the CNDR National Office manage data collection and updates.

Research

Privacy-protected, de-identified registry data is shared with approved clinicians and researchers to support studies, clinical trial planning, and other ethically approved research.

Impact

Registry insights help inform care, guide research priorities, and support the development of new treatments for people living with neuromuscular diseases.

Current Disease-Specific Registries

The CNDR continues to add new disease-specific registries. The conditions listed below represent our current disease-specific registries, but if you don’t see your condition listed below, you can still register with the CNDR. We welcome participation from people diagnosed with all neuromuscular conditions.

ALS

Amyotrophic Lateral Sclerosis (ALS)

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DMD

Duchenne Muscular Dystrophy (DMD)

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SMA

Spinal Muscular Atrophy (SMA)

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FSHD

Facioscapulohumeral Muscular Dystrophy (FSHD)

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Myotonic Dystrophy (DM)

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LGMD

Limb-Girdle Muscular Dystrophy (LGMD)

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CMS

Congenital Myasthenic Syndrome (CMS)

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OPMD

Oculopharyngeal Muscular Dystrophy (OPMD)

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SBMA

Spinal and Bulbar Muscular Atrophy (SBMA)

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Don't See Your Condition Listed?

If a disease-specific registry is not yet available for your condition, you can still register with the CNDR.

Registering allows you to share basic information so you can:

Be contacted if/when a disease-specific registry becomes available in the future
Learn about research studies or clinical trials that may be relevant to you
Help improve understanding of how neuromuscular diseases are distributed across Canada

For conditions without a disease-specific registry, CNDR does not collect detailed clinical information at this time, however, the information that is collected is still valuable and helps ensure people are connected to the CNDR network as registries continue to grow.

Join the CNDR

If you have a neuromuscular disease diagnosis, register and join over 6000 people across Canada who have contributed their data to help advance research and improve care for everyone living with neuromuscular diseases.