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Research Study |Rare Disease Patient Experiences, Interests, and Preferences in Pharmacology Education

What is this study about?

SickKids wants to hear from youth and families about their experiences searching for information about medications (e.g., side effects, efficacy, toxicity). Using this information, we aim to create educational resources onpharmacology topics.

Who can participate?

  • Youth 12-18 years old, with a rare disease diagnosis
  • Caregivers (parents) of children with a rare disease diagnosis

What is involved?

  • A virtual 30-60 minute one-on-one interview during a weekday afternoon or evening
  • Optional questionnaire about your demographic background

How will I benefit?

Participants will be given an honorarium in recognition of their contribution.

Contact:

For questions, please contact:

  • Michelle Wang: michelle.wang1@sickkids.ca
  • Zuha Pathan: Zuha.pathan@sickkids.ca
  • Principal Investigator: Dr. Tamorah Lewis

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