Research Survey and Focus Groups

Beth Sullivan, Senior Director of Community Engagement - LuMind IDSC Foundation
Beth Sullivan
Senior Director
of Community Engagement
LuMind IDSC  Foundation

“We are very community-driven and, in our view, research needs to incorporate the families’ voices as we need to better understand your needs and can thereafter accelerate research in a more targeted way.”

We conduct caregiver surveys as well as focus groups to gather feedback from families on important health medical care and independence topics.

We design our surveys with expert contributors and are working to publish the results in peer reviewed journals.

Recently, we have conducted or supported the following surveys:


Research attitudes, behavior and knowledge (2018)

Purpose: Perspectives on research interests and knowledge

Lead: LuMind IDSC

Participants: 256

Author(s): Nicole White (Antioch University), Anna Esbensen (Cincinnati Children’s)

Preview Responses: 86% want new treatments and interventions, but 64% never participated in research

Publication Pending


Sleep apnea (2019)


Purpose: Knowledge of treatment approaches, and diagnosis needs

Lead: LuMind IDSC

Participants: >800

Author: Sandra Gimenez (Hospital San Paul)

Preview Response: Only 17% of those diagnosed use a CPAP that fits and is used >4 hours/night

Publication Pending


Independence (2019)


Purpose: More granular understanding of independence need s of indivual with DS and the caregiver

Lead: LuMind IDSC

Participants: >400

Author(s): Priya Chandan (U Louisville), Stephanie Santoro (MGH)

Preview Response: 89% of caregivers want their loved one with DS to be as independent as possible

How You Can Help

Contact us for survey topics: researchers, clinicians, industry sponsors and families
Contact us for collaborating on a survey (disseminate or co-draft the survey).
Participate in surveys and focus groups (caregivers and self-advocates).