Evidence map›Paper›PMID 39999870›Full record

ArticleAmerican journal on intellectual and developmental disabilities2025

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

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

Registry-linked trialAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in American journal on intellectual and developmental disabilities, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04631237 (Developing a Down Syndrome Health Instrument), which is not on this map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT04631237 completednot on this map

Developing a Down Syndrome Health Instrument

TypeobservationalSponsorMassachusetts General HospitalRan2020 to 2025Enrolled758ConditionsDown Syndrome, Health, SubjectiveArmsObservational, no intervention
3 · Its place in the literature

Who cites it

3 citing papers in PubMed.

  1. Article
  2. Observational
  3. Anticholinergics, executive function, and cognitive/behavioral changes in Down syndrome.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025
    Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors.

Mikayla ShafferMikayla 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.
John Patrick T CoMikayla 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.
Karen DonelanMikayla 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.
Brian G SkotkoMikayla 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.
Amy TorresMikayla 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.
Jonathan P WinickoffMikayla 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.
Stephanie L SantoroMikayla 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.

Funding

Developing a Down Syndrome Health InstrumentK23HD100568 · NICHD · MASSACHUSETTS GENERAL HOSPITAL · PI SANTORO, STEPHANIE LYNN · 2020 to 2024
$847k
NICHD NIH HHS K23 HD100568
6 · The paper itself

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.

Indexed as

CaregiversDown SyndromePatient SelectionAdolescentAdultChildChild, PreschoolFemaleHumansInfantInfant, NewbornMaleRegistriesSurveys and QuestionnairesYoung AdultDown syndromehealth-related quality of lifelow incidence medical conditionssurvey methodstrisomy 21

Identifiers

PMID39999870
PMCPMC12243944

What OpenQuestion holds

Textmetadata
LicenceTDM
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Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.