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.


Open Surveys

Down syndrome and COVID-19 Survey

The Trisomy 21 Research Society (T21RS), with the financial and dissemination support of Down Syndrome Affiliates in Action (DSAIA), Down Syndrome Medical Interest Group-USA (DSMIG-USA), GiGi’s Playhouse, Jerome Lejeune Foundation, LuMind IDSC Foundation, Matthew Foundation, National Down Syndrome Society (NDSS), National Task Group on Intellectual Disabilities and Dementia Practices (NTG) and the endorsement of many international Down syndrome organizations, is collecting vital information to understand the risks and course of COVID-19 among people with Down syndrome (DS). The goal is to learn if people with DS are more vulnerable or have a different course of illness related COVID-19 and if their illness is related to their pre-existing health profile. We hope that this information will help identify who is at the greatest risk and how to better protect them.

You are invited to complete this survey about the person with DS for whom you provide care and has tested positive or has symptoms of COVID-19. Completion of this survey is your choice.

None of the survey data will be linked to you or the person with DS. In other words, it will be anonymous.

The survey will take about 10-20 minutes to complete. It asks for: 1) general information about the person with DS, 2) their pre-existing conditions, 3) whether they were tested for COVID-19, 4) COVID-19 symptoms and 5) treatments and outcome.

Please click on the link below to start the Caregiver Survey:

In English: https://redcap.emory.edu/surveys/?s=98DMP3CCN8
In Spanish: https://redcap.emory.edu/surveys/?s=DJEHCR77RD

We aim to release results every 2 weeks starting from the week of 18th of May to ensure that the information can be available to families and clinicians as it becomes available.

Topics of Interest Survey

Parent and Caregiver Feedback on Topics of Interest. The three-question survey is for parents and caregivers of people with Down syndrome who are interested in giving LuMind IDSC quick feedback on topics of the most interest to them. The survey will take less than 3 minutes to complete.

Create your own user feedback survey


Past Surveys

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).