Participation Opportunities

SCROLL DOWN

Find out about the latest participation opportunities. If you are an investigator and would like to promote your project on this page, please complete the form on the contact us page and we will contact you for more information.

All Rare Diseases

Date posted: 27-Aug-2025
Sponsor: SickKids
Investigator:
Dr. Tamorah Lewis, MD
Physician Scientist

Rare Disease Patient Experiences, Interests and Preferences in Pharmacology Education (RKC Pharm Ed)

About:

A study team at SickKids is inviting parents and children living with rare diseases to take part in a study aimed at improving how families learn about medications. They want to better understand your experiences with self directed learning about pharmacology (medications) and identify which topics matter most to you.

They are also exploring the strengths and weaknesses of current pharmacology resources for rare disease families. Your input will help them recognize gaps, highlight what works well, and guide the development of clearer, more useful tools.

The goal is to create educational resources that are family friendly, accessible, and tailored to your needs. By taking part, you will help physicians and researchers communicate more effectively during clinical care discussions and ensure families have the knowledge they need to make confident, informed decisions about treatments and clinical trials.

For more information, view the study flyer

This study has been funded by the RareKids-CAN and has been approved by the SickKids Research Ethics Board (3430).

Resources:

Study flyer

You can participate if you:

  • Have experience searching for information on medication related to the treatment or management of a rare disease AND

  • A youth with a rare disease between 12-18 years of age OR

  • A caregiver of a child with a rare disease (no age restriction)

Time commitment:

  • A brief, optional demographics survey

  • A 60–90-minute virtual focus group that will take place on weekday evenings (or weekends if needed)

Anxiety in children with autism spectrum disorder (ASD), ADHD, Tic Disorders, or genetic diagnosis of Fragile X, tuberous sclerosis or 22q11 deletions

Date posted: 14-July-2025
Sponsor: Holland Bloorview Kids Rehabilitation Hospital
Investigator:
Dr. Evdokia Anagnostou, MD
Pediatric Neurologist

A Randomized Placebo-Controlled Trial of Sertraline vs. Placebo in the Treatment of Anxiety in Children and AdoLescents with NeurodevelopMental Disorders: The “CALM” Study

About:

A group of researchers at the Holland Bloorview Kids Rehabilitation Hospital are currently studying a medication called sertraline to help reduce anxiety in children and teens with neurodevelopmental disorders. 

For more information, view the study flyer

This study has been funded by the Canadian Institutes of Health Research and has been approved by the Holland Bloorview Research Ethics Board (CTO-3573).

Resources:

Study flyer

You can participate if you are:

  • Children and teens between 8 and 17 years old

  • Diagnosed with autism spectrum disorder (ASD), ADHD, Tic Disorders, or genetic diagnosis of Fragile X, tuberous sclerosis or 22q11 deletions

  • Meet criteria for an anxiety disorder

  • Able to tolerate venipuncture (bloodwork)

Time commitment:

  • This study is comparing sertraline against placebo for reducing anxiety symptoms

  • The trial is 16 weeks long

  • There are 7 study visits

  • Study procedures include bloodwork, smartwatch technology and questionnaires

Intellectual Disabilities (e.g., Rett’s Syndrome)

Date posted: 12-May-2025
Sponsor: University of Alberta
Investigators:
Dr. Shannon Scott, RN, PhD
Professor, Faculty of Nursing
Ph. 780-492-1037 
Shannon.scott@ualberta.ca

Dr. Lisa Hartling, PhD
Professor, Department of Pediatrics
Ph. 780-492-6124
Hartling@ualberta.ca

Arts-based digital knowledge translation tools for parents, on common pediatric conditions in emergency department visits 

About:

A group of researchers at the University of Alberta are interested in hearing from parents of children with intellectual developmental disorders (IDD). They are seeking feedback on their newly developed resource. Parents will be asked to complete a 10 minute survey online.

This study has been funded by the Canadian Institutes of Health Research and has been approved by the University of Alberta Research Ethics Board (Pro00062904).

You can participate if you are:

  • A parent of a child under 18 years who has an intellectual developmental disorder (e.g. Autism Spectrum Disorder, Trisomy 21, Fragile X, Rett’s Syndrome)

  • Living in Canada

  • Able to read and write English

Time commitment:

  • You will be asked to complete a 10-15 minute survey online