Join | Login







Research opportunities

Research Studies for Youth and Teens

This page is for youth and teens who may want to get involved in research, as well as parents and caregivers supporting that decision. Some studies are designed specifically for young people, while others invite families to share experiences about growing up with PKU, HCU, MSUD, or UCDs.

Good to know: Youth and teen participation may require parent or caregiver consent depending on age, location, and study type. Always check the official study information for full details.
Common study types for youth and teens
  • Surveys about quality of life, mental health, and social experience
  • Transition-to-adult-care studies
  • Treatment adherence, independence, and self-management research
  • Observational studies and registries
  • Family research that includes youth or teen perspectives
Current opportunities - Not Rare Disorder Based

RKC PharmEd Study - Youth and Caregiver Perspectives on Medication Information
Study focus: How youth with rare diseases and their parents/caregivers search for pharmacology (medication-related) information
Population: Youth (ages 12-18) and caregivers
Location: Canada (virtual participation)
Study type: Interview and survey-based research
Compensation: $40 honorarium

This study, led by the RareKids-CAN Pharmacology Sub-Platform, explores how youth and families find and use medication-related information for rare diseases. Participants will be invited to take part in a 30-60 minute virtual interview, with optional questionnaires to share additional insights.

Insights from this study will help shape future research and improve how pharmacology information and therapies are supported for children, teens, young adults, and their families across Canada.

Eligibility:
  • Youth aged 12-18 living with a rare disease
  • OR parent/caregiver of a child with a rare disease
  • Residing in Canada
.

External search tools

You can also explore broader listings through trusted databases.