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Research opportunities

Research Studies for Caregivers

Caregivers play an essential role in rare disease research. This page highlights studies that may involve parent, caregiver, or family perspectives related to diagnosis, care burden, treatment access, nutrition, mental health, transition, and daily life with PKU, HCU, MSUD, or UCDs.

Good to know: Some caregiver studies involve only adult respondents, while others are family-based and may also include the person living with the condition. Participation requirements can vary by study.
Common study types for caregivers
  • Parent and caregiver surveys
  • Family experience and burden-of-care studies
  • Interviews and focus groups about treatment, access, and daily life
  • Quality of life and psychosocial research
  • Registry and long-term follow-up participation
Current opportunities
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 with rare diseases and their parents/caregivers search for medication-related information. Participants will be invited to take part in a 30-60 minute virtual interview, and may also complete an optional demographics questionnaire and a brief survey ranking pharmacology topics they consider important.

Information shared through this study will help inform how RareKids-CAN supports research and advances access to therapies 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.