Clinical trials can be a source of hope and care for people affected by rare disease.

Many feel it’s worth it, but taking part in a trial is never easy. Knowing what questions to ask can help you figure out:

  • how the trial you are considering would fit into your daily life
  • what support can be provided to you to make participating easier
  • whether participation feels right for you

We hope this guide will give you useful information and confidence as you explore your options!

Updated 27APR2021

Questions about how to use this tool? Contact the Center for Rare Disease.

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What to ask for when you’re interested in a clinical trial: A guide for rare disease patients and caregivers

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