Read the Bissonette’s Story

Participate in a Research Study

Muscular Dystrophy Canada is often approached by researchers who are looking to raise awareness about their projects. And similarly, people affected by neuromuscular disorders often want to know how they may participate in health-related research. We have developed this listing, as well as a listing of Clinical Trials, to serve the neuromuscular community by facilitating connections and information-sharing.

This information is intended to inform patients and/or family members about current studies that may be of interest. Muscular Dystrophy Canada is not responsible for the oversight or management of the projects listed below.

To add a project to this listing

Please send summary of the project and contact details to info@muscle.ca.

We encourage researchers to share the results of their work with the patient community. We would be pleased to post relevant materials, including executive summaries or final reports.

 


 

A Peer E-mentoring Intervention to Improve Employment

Sponsor: Holland Bloorview Kids Rehabilitation Hospital

Contact: Sally Lindsay, PhD
416 425 6220 ext 3654
slindsay@hollandbloorview.ca

Collaborators:

  • Ability Online
  • University of Toronto
  • The Hospital for Sick Children
  • University of Ottawa
  • Social Sciences and Humanities Research Council of Canada

Summary: Despite the strong business case of hiring people with disabilities, a significant proportion of youth with disabilities leave high school and neither work nor continue their education and are unprepared to meet the demands of a work environment. Although youth with disabilities have much to gain from employment readiness programs, they are often excluded from, or have limited access to school and community vocational programs. One encouraging approach to address gaps in vocational programming is through peer mentoring, which may facilitate a smoother transition to adulthood by offering support to enhance coping skills. Despite the increase in online communities, little is known about their impact on vocational mentoring for youth with physical disabilities and their parents. The purpose of this study is to develop, implement and assess the feasibility of an online peer mentor employment readiness intervention for youth with physical disabilities and their parents to improve their self-efficacy, career maturity and social support.

ClinicalTrials.gov Identifier: NCT02522507

 


 

Uses of complementary and alternative medicine (CAM) among individuals with genetic and chromosomal abnormalities

The primary aim of this study is to learn more about complementary and alternative medicine use including type, amount of use, reason behind use, and its effects among individuals with a genetic condition or chromosomal abnormality.

You are eligible to participate if you are:

  • 18 years or older with either a genetic or chromosomal abnormality; or the parent or legal guardian of a minor who has been diagnosed with either a genetic or chromosomal abnormality.
  • You have used or are using complementary and alternative medicine
  • If you decide to participate, the next step is to complete an anonymous, online survey.
  • your responses to the survey questions will remain confidential.
  • This study is completely voluntary.
  • Thus, you are free to refuse to participate or to withdraw your consent to be in this study at any time.
  • There will be no penalty or unfair treatment should you choose not to be in this study.
  • There are no foreseeable risks associated with the survey, only those associated with feelings that may arise from survey questions.
  • There are most likely no immediate benefits for participating in the survey.

By clicking the link below, you are affirming that you are of at least 18 years of age.

Genetics and CAM Survey

 

PI: Caroline Koch, University of Arkansas for Medical Sciences
The University of Arkansas for Medical Sciences Institutional Review Board, which ensures that research involving people follows federal regulations, has approved the research and this consent form. Please contact irb@uams.edu or (501) 686-5667 for questions concerning how the research is conducted. IRB number 205778

 


 

Bridging the Gap: A Palliative Approach to Care for Young Adults (British Columbia)

Doctors’ Karen Cook and Kim Bergeron have received funding from Canadian Institute for Health Research(CIHR) – Strategy for Patient Oriented Research (SPOR) for a research study for young adults with palliative conditions living in British Columbia.

Learn more

 


 

Long-term outcomes of individuals born with arthrogryposis.

LOGO_icord

Researchers from the University of British Columbia in Vancouver CANADA, are conducting a research study to look at the long term outcomes of individuals born with arthrogryposis. This study has been funded in part by the Rare Diseases Foundation in Vancouver.

Arthrogryposis Multiplex Congenita (AMC) is a condition where primarily the limbs have significant limitation in motion at birth. Many individuals undergo many surgeries and extensive physiotherapy to improve range of motion. Physicians and researchers from around the world agree that there is still little known about what treatment works best for long term function. We propose the largest international study to determine what happens to the long-term health (>19 yrs of age) of individuals living with AMC, using an online survey and an optional additional telephone interview. We as researchers from the University of British Columbia in Vancouver, Canada are very interested in learning more about the natural progress and best therapies for various types of AMC.

Find out more

 


 

Examining adults with physical disabilities’ perceptions of athletes with physical disabilities.

School of Kinesiology and Health Studies, Queen’s University.

If you are an adult (over 18 years old) with a physical disability, who reads and understands English, and has access to a computer with audiovisual capabilities and internet access, please consider participating by completing a 15-minute online questionnaire. As a thank you for your participation, you will receive a $5 online gift card to your choice of either Starbucks or Amazon.

Principal Investigator, Dr. Amy Latimer-Cheung
(613)533-6000 ext. 78773

Co-investigator, Celina Shirazipour
(613)533-6000 ext. 78841

 


 

The Congenital Muscle Disease International Registry (CMDIR) is recruiting patients to participate in clinical trials for Congenital muscular dystrophy.

The first step for those interested in participating in these studies is to register with the CMDIR.

For more information, please contact Rachel Alvarez, Associate Director, Congenital Muscle Disease International Registry (CMDIR). Phone: (323) 250-2399

 


 

Investigators at the University of British Columbia and Sunny Hill Health Centre for Children are conducting a study investigating the feasibility of conducting research measuring the impact of providing a new power wheelchair, on wheelchair driving performance and participation in everyday activities for children and youth with significant mobility limitations. The study is recruiting children (5-17 years) and families in Vancouver/ Lower Mainland, BC, and will involve:

  • Questionnaires & driving assessments
  • Repeated sessions with less than 2 hour/session
  • An honorarium will be provided for your time

Find out more.

 


 

Participate in a study examining measures of scooter use. Researchers from the University of British Columbia are looking for volunteers who:

  • are 19 years of age or older;
  • have owned a scooter for at least 3 months;
  • have mobility limitations that prevent you from going more than one block without and assistive device;
  • can read, write and speak in English.

Find out more.

 

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