Evidence map›Paper›PMID 24725110›Full record

ArticleIntellectual and developmental disabilities2014

Family experience in a regional participant contact registry for research on intellectual disability.

Frances A Conners, B Allyson Phillips, Jennifer D Rhodes, James C Hamilton

Abstract read
In one paragraph

Article in Intellectual and developmental disabilities, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. 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

4 authors.

Frances A Conners
B Allyson Phillips
Jennifer D Rhodes
James C Hamilton

Funding

Cognitive predictors of language impairment in Down syndromeR01HD055345 · NICHD · UNIVERSITY OF ALABAMA IN TUSCALOOSA · PI CONNERS, FRANCES A · 2009 to 2013
$2.0M
NICHD NIH HHS HD055345NICHD NIH HHS HD055345-S1NICHD NIH HHS R01 HD055345
6 · The paper itself

Abstract

Participant recruitment is one of the most significant challenges in research on intellectual disability (ID). One potential solution is to develop a participant contact registry, which allows the researcher to contact participants directly rather than recruiting through multiple schools or service agencies. The authors describe the development of one such registry and results of a survey of registry families. Results suggest that families joined the registry to help others, they hope research in the ID field improves the daily lives of individuals with ID and their families, and they find research participation to be a positive experience. However, logistic concerns can be an important barrier to their research participation, and they would like more information about the research study both before and after participating.

Indexed as

Intellectual DisabilityPatient SelectionRegistriesResearchAdolescentAdultChildChild, PreschoolFamilyFemaleHumansInfantMaleMiddle AgedSurveys and QuestionnairesYoung Adult

Identifiers

PMID24725110
PMCPMC9938699

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

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.