Announcing a new online research study out of the University of Pittsburgh for Gemin5 patients and caregivers.
The purpose of this research study is to investigate what factors adult patients and caretakers would consider when assessing potential treatment types for individuals with Gemin5 syndrome. We will be asking up to 50 individuals (adult patients with Gemin5 syndrome and caretakers of patients with Gemin5 syndrome) to participate in 3 different activities for this study via an online platform called GroupWisdom. The first study will be a brainstorming session, the second will be grouping the brainstormed items, and the third will be ranking the items based on their importance. These first three activities will be completed asynchronously. It is expected each activity will take approximately 20 minutes. A fourth optional session to discuss results will be offered and could take up to 60 minutes. Individuals interested in participating can contact Courtney McGuire at Courtney.mcguire@pitt.edu to be enrolled in the study, or with any questions. Dr. Deepa Rajan is serving as committee chair for this master’s thesis project.
Courtney McGuire grew up near Ann Arbor, Michigan. She graduated from Ferris State University with a Bachelor’s in Molecular Diagnostics, then spent over four years working in a DNA damage repair research lab at the University of Michigan. She now lives in Pittsburgh with her husband and their dog, Ellie. Courtney is a second year MS in Genetic Counseling student at the University of Pittsburgh. She has taken a special interest in rare disease research and neurogenetics.
Enroll in this study by emailing Courtney.mcguire@pitt.edu