Rare Disease Patient Experiences, Interests and Preferences in Pharmacology Education (RKC Pharm Ed)
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.
This study has been funded by the RareKids-CAN and has been approved by the SickKids Research Ethics Board (3430).
You can participate if you are:
- 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)
All rare diseases
Date posted: 27-Aug-2025
Sponsor: SickKids
Investigator:
Dr. Tamorah Lewis, MD
Physician Scientist
