Successful (and Unsuccessful) Recruitment Approaches and Participant Loss in a Down Syndrome Survey

Shaffer, Mikayla; Co, John Patrick T.; Donelan, Karen; Skotko, Brian G.; Torres, Amy; Winickoff, Jonathan P.; Santoro, Stephanie L.

doi:10.1352/1944-7558-130.2.131

Article navigation

Research Article| February 26 2025

Successful (and Unsuccessful) Recruitment Approaches and Participant Loss in a Down Syndrome Survey

Mikayla Shaffer;

Mikayla Shaffer

Mikayla Shaffer, Massachusetts General Hospital, John Patrick T. Co, Harvard Medical School, Karen Donelan, Brandeis University and Massachusetts General Hospital, Brian G. Skotko, Massachusetts General Hospital and Harvard Medical School, Amy Torres, Massachusetts General Hospital, Jonathan P. Winickoff, Massachusetts General Hospital and Harvard Medical School, and Stephanie L. Santoro, Massachusetts General Hospital and Harvard Medical School

Search for other works by this author on:

This Site

PubMed

Google Scholar

John Patrick T. Co;

John Patrick T. Co

Mikayla Shaffer, Massachusetts General Hospital, John Patrick T. Co, Harvard Medical School, Karen Donelan, Brandeis University and Massachusetts General Hospital, Brian G. Skotko, Massachusetts General Hospital and Harvard Medical School, Amy Torres, Massachusetts General Hospital, Jonathan P. Winickoff, Massachusetts General Hospital and Harvard Medical School, and Stephanie L. Santoro, Massachusetts General Hospital and Harvard Medical School

Search for other works by this author on:

This Site

PubMed

Google Scholar

Karen Donelan;

Karen Donelan

Mikayla Shaffer, Massachusetts General Hospital, John Patrick T. Co, Harvard Medical School, Karen Donelan, Brandeis University and Massachusetts General Hospital, Brian G. Skotko, Massachusetts General Hospital and Harvard Medical School, Amy Torres, Massachusetts General Hospital, Jonathan P. Winickoff, Massachusetts General Hospital and Harvard Medical School, and Stephanie L. Santoro, Massachusetts General Hospital and Harvard Medical School

Search for other works by this author on:

This Site

PubMed

Google Scholar

Brian G. Skotko;

Brian G. Skotko

Mikayla Shaffer, Massachusetts General Hospital, John Patrick T. Co, Harvard Medical School, Karen Donelan, Brandeis University and Massachusetts General Hospital, Brian G. Skotko, Massachusetts General Hospital and Harvard Medical School, Amy Torres, Massachusetts General Hospital, Jonathan P. Winickoff, Massachusetts General Hospital and Harvard Medical School, and Stephanie L. Santoro, Massachusetts General Hospital and Harvard Medical School

Dr. Brian G. Skotko has received research funding from AC Immune and LuMind IDSC Down Syndrome Foundation, speaking and consultancy fees, author royalties, and has non-paid affiliations with the Massachusetts Down Syndrome Congress and National Center for Prenatal and Postnatal Down Syndrome Resources.

Search for other works by this author on:

This Site

PubMed

Google Scholar

Amy Torres;

Amy Torres

Mikayla Shaffer, Massachusetts General Hospital, John Patrick T. Co, Harvard Medical School, Karen Donelan, Brandeis University and Massachusetts General Hospital, Brian G. Skotko, Massachusetts General Hospital and Harvard Medical School, Amy Torres, Massachusetts General Hospital, Jonathan P. Winickoff, Massachusetts General Hospital and Harvard Medical School, and Stephanie L. Santoro, Massachusetts General Hospital and Harvard Medical School

Search for other works by this author on:

This Site

PubMed

Google Scholar

Jonathan P. Winickoff;

Jonathan P. Winickoff

Mikayla Shaffer, Massachusetts General Hospital, John Patrick T. Co, Harvard Medical School, Karen Donelan, Brandeis University and Massachusetts General Hospital, Brian G. Skotko, Massachusetts General Hospital and Harvard Medical School, Amy Torres, Massachusetts General Hospital, Jonathan P. Winickoff, Massachusetts General Hospital and Harvard Medical School, and Stephanie L. Santoro, Massachusetts General Hospital and Harvard Medical School

Search for other works by this author on:

This Site

PubMed

Google Scholar

Stephanie L. Santoro

Mikayla Shaffer, Massachusetts General Hospital, John Patrick T. Co, Harvard Medical School, Karen Donelan, Brandeis University and Massachusetts General Hospital, Brian G. Skotko, Massachusetts General Hospital and Harvard Medical School, Amy Torres, Massachusetts General Hospital, Jonathan P. Winickoff, Massachusetts General Hospital and Harvard Medical School, and Stephanie L. Santoro, Massachusetts General Hospital and Harvard Medical School

Dr. Stephanie L. Santoro has received research funding from LuMind IDSC Down Syndrome Foundation and has non-paid affiliations with the Massachusetts Down Syndrome Congress, Down Syndrome Medical Interest Group (DSMIG-USA), and American Academy of Pediatrics Council on Genetics.

Correspondence concerning this article should be addressed to Dr. Stephanie L. Santoro, 125 Nashua St., Suite 821, Boston, MA 02114 (email: [email protected]).

Search for other works by this author on:

This Site

PubMed

Google Scholar

Am J Intellect Dev Disabil (2025) 130 (2): 131–145.

https://doi.org/10.1352/1944-7558-130.2.131

Abstract

We recruited caregivers of individuals ages 0–21 with Down syndrome (DS) to complete an electronic survey. Multiple recruitment sources and methods were used. From 2023–2024, we received 542 valid, complete survey responses. We found the most success with use of DS affiliate organizations, the DS-Connect® contact registry for DS, and outreach to DS clinic patients. Of those who started the screener, 1,569 people screened in and were eligible; of those eligible, 730 (46.5%) consented. We experienced bots and fraudsters despite efforts to minimize those respondents from the outset. We present lessons learned in surveying caregivers from a low-incidence medical condition, with focus on our experience with invalid respondents, to inform other researchers conducting survey research related to genetic syndromes.

©AAIDD

2025

You do not currently have access to this content.

Don't already have an account? Register

You could not be signed in. Please check your email address / username and password and try again.

AJIDD Call for Papers

The American Journal on Intellectual and Developmental Disabilities is looking for high-quality research articles on bio-psycho-social processes and their role in the healthy development and behavioral outcomes for people with IDD across the lifespan. For more information, contact the AJIDD editor, Frank Symons ([email protected]) or go to the AJIDD author instructions at https://meridian.allenpress.com/ajidd/pages/Info-for-Authors.

Successful (and Unsuccessful) Recruitment Approaches and Participant Loss in a Down Syndrome Survey

Abstract

Citing articles via

Get Email Alerts

Successful (and Unsuccessful) Recruitment Approaches and Participant Loss in a Down Syndrome Survey

Abstract

Sign in

Client Account

Sign in via your Institution

Citing articles via

Get Email Alerts

This Feature Is Available To Subscribers Only