Outreach for Research Through DS Organizations
Lucy Hannigan-Ewing
From: Davila Bocaranda, Andrea (She/Her/Hers) <Andrea.Davi...@cchmc.org>
Date: Tue, Dec 3, 2024, 12:13 PM
Subject: Outreach for Research Through DS Organizations
To: lucyi...@gmail.com <lucyi...@gmail.com>
Hello South Puget Sound Up with Down Syndrome,
We’re following up on our previous email, hoping your Down syndrome group can help get the word out. We really need your support with getting the word out about our survey to create a new measure specific to behaviors in DS and encouraging participation.
I am emailing on behalf of Dr. Anna Esbensen, who is a professor and clinical psychologist at the Down syndrome clinic at Cincinnati Children’s Hospital. She has received funds from the National Institutes of Health (along with collaborators Lina Patel, PsyD, Kelly Kamimura-Nishimura, MD, Adam Carle, PhD, and Susan Wiley, MD) to develop a new measure of behavioral challenges among children (ages 2-17 years) with Down syndrome (to be extended later to adults) that can be used in health care and research. The goal is to have a measure sensitive to detecting challenges and change with treatment.
We would be deeply appreciative if South Puget Sound Up with Down Syndrome would be willing to support our research efforts by sharing a link to our survey with families connected to your organization. The study is IRB approved and we are happy to respond to any questions via email, phone, or zoom before you agree to send anything out. If interested and willing, we are happy to share our flyers, survey link/QR code, and email language to support how you connect with your families. We have attached our study explanation video to this email.
Thank you for considering our request!
English video link: BIDS | Cincinnati Children's (youtube.com)
Spanish video link: BIDS (Spanish) | Cincinnati Children's (youtube.com)
Sincerely,
Andrea, on behalf of Dr. Anna Esbensen
Andrea Davila Bocaranda
Clinical Research Coordinator III
Division of Developmental & Behavioral Pediatrics
3430 Burnet Ave | MLC 4002 | Cincinnati, OH 45229-3039