Other Current Opportunities
The CNDR is a national research project that aims to create a database of people suffering from neuromuscular diseases across Canada.
The CNDR database will collect medical information on people suffering from neuromuscular diseases to increase access to research opportunities and to improve the consistency of care across the country.
We are currently registering patients with ALS.
To self-register, please click on this link
Primary Lateral Sclerosis (PLS) Natural History Study
Who are we recruiting?
We are recruiting people with Primary Lateral Sclerosis (PLS) or those who may have PLS. PLS is a rare disease that affects the nerves in the brain and spinal cord that control the muscles. Due to its rarity, PLS has not been included in clinical drug trials of potential treatments. There is a serious need for treatment options for those who have PLS.
What is the purpose of the research?
The purpose of this study is to improve the research status of PLS by collecting clinical data that will be used in future clinical drug trials. The data collected will help to serve as the foundation for future treatment options for patients with PLS.
What will participants do?
Participants will be asked to participate in clinical assessments. These assessments include:
measures of motor function (such as muscles strength tests)
quality of life (questionnaires that ask about how PLS is having an impact on important parts of your life)
cognition (thinking and memory)
collection of biological samples (urine and blood)
nerve and muscles tests (measuring muscle contractions with a needle)
It will take approximately one year to complete the study. You will have three in-person and three remote video-call telephone visits.
Kennedys Disease Study (SBMA)
Who are we recruiting?
We are recruiting people with Spinal Bulbar Muscular Atrophy (SBMA) also known as Kennedys Disease.
What is the purpose of the research?
SBMA is a genetic condition causing weakness of muscles in the face and limbs, starting in adulthood. Because it is “X-linked” it generally only affects males, but females who are carriers of the mutation may also develop a milder condition. We believe that female carriers may be more likely to develop symptoms if they have inactivation of one X-chromosome more than the other.
The purpose of this research study is to learn more about the prevalence, clinical features, and genetics of SBMA.
What will participants do?
The duration of this project is 5 years. When you consent to participate in this study, you will be in the study for 2 years:
• We collect clinical information and a DNA sample when you join the study.
• We collect clinical information again after 2 years.