Evidence map›Paper›PMID 39455611›Full record

ArticleNPJ Parkinson's disease2024

Participant-reported personal utility of genetic testing for Parkinson's disease and interest in clinical trial participation.

Hannah Oas, Lola Cook, Tae-Hwi Schwantes-An, Laurence E Walsh, Anne-Marie Wills, Ignacio F Mata, Martha A Nance, James C Beck, Anna Naito, Karen Marder and 2 more

Abstract read
In one paragraph

Article in NPJ Parkinson's disease, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed, 1 pooled it
–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

5 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Review
  3. Review
  4. Article
  5. Review
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

12 authors.

Hannah OasDepartment of Medical and Molecular Genetics, Indiana University School of Medicine, Indianapolis, IN, USA.
Lola CookDepartment of Medical and Molecular Genetics, Indiana University School of Medicine, Indianapolis, IN, USA.
Tae-Hwi Schwantes-AnDepartment of Medical and Molecular Genetics, Indiana University School of Medicine, Indianapolis, IN, USA.
Laurence E WalshDepartment of Medical and Molecular Genetics, Indiana University School of Medicine, Indianapolis, IN, USA.
Anne-Marie WillsDepartment of Neurology, Massachusetts General Hospital, Boston, MA, USA.
Ignacio F MataDepartment of Genomic Medicine, Lerner Research Institute, Cleveland Clinic, Cleveland, OH, USA.ORCID http://orcid.org/0000-0003-1198-0633
Martha A NanceStruthers Parkinson's Center, Health Partners Institute, Minneapolis, MN, USA.
James C BeckParkinson's Foundation, New York, NY, USA.ORCID http://orcid.org/0000-0002-4884-9893
Anna NaitoParkinson's Foundation, New York, NY, USA.ORCID http://orcid.org/0000-0002-4812-071X
Karen MarderDepartment of Neurology, Columbia University Irving Medical Center, New York, NY, USA.
Roy N AlcalayDepartment of Neurology, Columbia University Irving Medical Center, New York, NY, USA.
Jennifer VerbruggeDepartment of Medical and Molecular Genetics, Indiana University School of Medicine, Indianapolis, IN, USA. jlverbru@iu.edu.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Genetic testing for Parkinson's disease (PD) is infrequently performed due to perceptions of low utility. We investigated the personal utility in PD GENEration and how results lead to enrollment in additional research studies. Participants (n = 972) underwent genetic testing, results disclosure, genetic counseling, and completed a survey examining the perceived personal utility of their results and interest in participating in additional studies. Most participants found their genetic test results useful, including satisfying curiosity (81%), feeling good about helping the medical community (80%), and having information to share with family (77%). There were no significant differences in responses based on result type. Forty-five percent of participants expressed interest in participating in research studies; whereas 16% of participants confirmed enrollment. Our results suggest that participants find personal utility in genetic testing regardless of results. Although participants may be interested in enrolling in additional research, they may need support and resources.

Identifiers

PMID39455611
PMCPMC11511990

What Socratic holds

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LicenceCC BY
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 Socratic graph.