Attention PURA Caregivers! Please see information below on an important study being done. Thank you for your time.
My name is Janeyce McCray, I am a researcher at Weill Cornell Medical College in New York, New York. The research study I am conducting is in collaboration with Dr. Zachary Grinspan in the Department of Pediatric Neurology. The study consists of interviewing caregivers of children with PURA syndrome in order to understand what aspects of PURA syndrome are most challenging for patients and their families to improve PURA syndrome clinical trials.
Responses will be collected as to how the symptoms of PURA syndrome and the ways in which they impact your child’s and your family’s daily lives. All collected responses will be analyzed for common themes, and findings will be shared with Dr. Zachary Grinspan and with Weill Cornell Medical College. However, any written report or publication of my findings will not include your name or any identifying information.
If you have any questions or would like to participate, please contact me!
Phone: (908) 500-9781
Please note the PURA Foundation is not affiliated with this study at Weill Cornell Medical College. We are sharing this for informational purposes, all questions should be directed to the email address above.