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Some considerations for caregivers of study participants    

If your loved one wants to participate in a study, you should realize that your role as caregiver may be impacted in the following ways:


  • Time commitment – your loved one may be required to see a study doctor more often than would be needed with standard treatment.
  • No guarantees – you may be very hopeful that your loved one is receiving an investigational medication; however, you must remember the drug is not proven to work.
  • Uncharted territory – it may be difficult to find other people in local support groups who can share your experience.
  • Study compliance and responsibilities – ensure that your loved one goes to study visits, takes study medication as instructed, and fulfills commitments as detailed in the Informed Consent Form.

In addition, some clinical studies also require the active participation of the caregiver. For example, in order for your loved one to participate in a clinical study, you may need to keep a diary of symptoms or a record of your impressions regarding the investigational medication.