Evidence map›Paper›PMID 38229892›Full record

ArticleJournal of clinical and translational science2023

Investigator and participant expectations for returning non-genetic results: insights from the Rare and Atypical Diabetes Network (RADIANT) study.

Forough Noohi, Manu S Sundaresan, Rochelle N Naylor, Lainie Friedman Ross

Abstract read
In one paragraph

Article in Journal of clinical and translational science, 2023. 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.

Forough NoohiDepartment of Medicine, University of Chicago, Chicago, IL, USA.
Manu S SundaresanDepartment of Medicine, University of Chicago, Chicago, IL, USA.ORCID https://orcid.org/0000-0003-2205-7297
Rochelle N NaylorDepartment of Medicine, University of Chicago, Chicago, IL, USA.
Lainie Friedman RossDepartment of Medicine, University of Chicago, Chicago, IL, USA.ORCID https://orcid.org/0000-0002-7395-3000

Funding

RARE and Atypical Diabetes Network(RADIANT)U54DK118638 · NIDDK · BAYLOR COLLEGE OF MEDICINE · PI ASHOK BALASUBRAMANYAM · 2018 to 2026
$22.7M
RADIANT Clinic and Data Coordinating CenterU54DK118612 · NIDDK · UNIVERSITY OF CHICAGO · PI Louis H. Philipson, Miriam Sargon Udler · 2018 to 2026
$21.9M
NIDDK NIH HHS L30 DK106874NIDDK NIH HHS U54 DK118612NIDDK NIH HHS U54 DK118638
6 · The paper itself

Abstract

Objectives/Goals: The Rare and Atypical DIAbetes NeTwork (RADIANT) aims to discover the underlying pathoetiology of atypical diabetes by conducting both genotyping and non-genetic deep phenotyping. While the return of genetic test results in research settings has been investigated, the return of non-genetic results (RoR-NG) has received less attention. We explore the RoR-NG with RADIANT investigators and participants. Methods/Study Population: We conducted one-on-one interviews with 10 adult RADIANT participants and 10 RADIANT investigators. Participants also completed two health literacy screening tools and a survey on perspectives regarding return of results (RoR). Investigators completed one survey on experience and confidence in explaining clinical tests utilized in the RADIANT study and another survey on perspectives regarding RoR. Results: Most participants were non-Hispanic White. All participants had high scores on health literacy screens. Both RADIANT participants and investigators expressed strong support for RoR-NG. RADIANT participants and investigators acknowledged the different roles and responsibilities between research and clinical care for interpreting and acting on non-genetic results. However, the lines between clinical care and research in returning and acting on results were often blurred by both participants and investigators. Discussion/Significance: Our study provides important insight into how both investigators and participants simultaneously distinguish and blur clinical and research roles and responsibilities when discussing non-genetic research results and the return of these results. Further study should engage individuals from diverse racial and ethnic backgrounds and with varying levels of health literacy to understand how best to support all participants when returning research results.

Indexed as

Atypical diabetesgenetic exceptionalisminvestigator-clinician dualitymonogenic diabetesnongenetic informationparticipant-patient dualityreturn of resultstherapeutic misconception

Identifiers

PMID38229892
PMCPMC10789975

What OpenQuestion holds

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Registered trials

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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.