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Return of Individual Research Results

Research Question:
What are the key perspectives related to return of individual research data and can we generate a comprehensive framework to guide processes related to returning individual research results?

Basic Study Information

Purpose:
This study involves one 60-90 minute recorded interview during which we will ask about your views of the return of individual research data to subjects. You will be compensated $40 for participating. To participate, you must be a parent of a child with a rare neurological disease, an IRB representative, a Sponsor, a Clinician or a Clinical Researcher.

Location: Zoom
Study Reference #: STUDY00005679

Lead Researcher (Principal Investigator)

Lead Researcher:  Erika Augustine

Study Contact Information

Study Coordinator: Grace Zimmerman
Phone: (585) 738-7811
Email: ethicalror@urmc.rochester.edu

Additional Study Details

Study Details:
All study activities will be completed over Zoom.

Number of Visits:  1

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