Evidence map›Paper›PMID 39181557›Full record

ArticleBMJ open2024

Building expert consensus regarding sharing of individual research results in Alzheimer's disease research: a Delphi study protocol.

Lauren R Sankary, Valerie Rico, Megan Zelinsky, Helen S Webster, Alan J Lerner, Kathryn Martinez, Paul J Ford, Babak Tousi, James Leverenz

Abstract readConsensus Statement
In one paragraph

Article in BMJ open, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing 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

4 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
  4. 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

9 authors.

Lauren R SankaryCleveland Clinic, Cleveland, Ohio, USA sankarl@ccf.org.ORCID 0000-0002-9698-3616
Valerie RicoCleveland Clinic, Cleveland, Ohio, USA.
Megan ZelinskyCleveland Clinic, Cleveland, Ohio, USA.
Helen S WebsterSaint Louis University - St. Louis Campus, St. Louis, Missouri, USA.
Alan J LernerCase Western Reserve University Hospital, Cleveland, Ohio, USA.
Kathryn MartinezCleveland Clinic, Cleveland, Ohio, USA.
Paul J FordCleveland Clinic, Cleveland, Ohio, USA.
Babak TousiCleveland Clinic Lou Ruvo Center for Brain Health, Cleveland, Ohio, USA.
James LeverenzCleveland Clinic Lou Ruvo Center for Brain Health, Cleveland, Ohio, USA.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionInformed decisions to enrol in the clinical investigations of Alzheimer's disease and related dementias (ADRD) require careful consideration of complex risks and uncertain benefits. Decisions regarding whether to receive information about biomarker status are complicated by lack of scientific consensus regarding biomarkers as surrogate endpoints for Alzheimer's disease and how information about individual risk should be evaluated and shared with research participants. This study aims to establish stakeholder consensus regarding ethically optimal approaches to sharing individual results with ADRD research participants. METHODS AND ANALYSIS: This Delphi consensus-building study consists of multiple online surveys conducted with Alzheimer's disease research experts, including neurologists, neuropsychologists, ethicists, research oversight specialists and clinical trialists. Panellists will be administered questionnaires developed from a synthesis of researcher- and participant-endorsed considerations and decisional needs identified in published literature and a decisional needs assessment conducted with support from an Alzheimer's Association Research Grant. Panellists will also be asked their views on the content and implementation of processes for sharing individual research results. ≥75% agreement will be required to achieve consensus. Response rates, level of agreement, medians, interquartile ranges and group rankings will be analysed. Following each round of data collection, our research team will undertake qualitative content analysis of open-ended responses. ETHICS AND DISSEMINATION: Ethical approval will be obtained from the Cleveland Clinic Institutional Review Board (Study Number 22-766). Delphi panellists will receive participant information sheets describing the study before agreeing to participate in the Delphi process. Results from the data we anticipate will be generated through this research and will be submitted for peer-reviewed journal publication and presentation at international conferences.

Indexed as

Alzheimer DiseaseBiomedical ResearchConsensusDelphi TechniqueInterdisciplinary ResearchBiomarkersEthics, ResearchHumansResearch DesignStakeholder ParticipationSurveys and QuestionnairesBiomarkersClinical TrialDementiaMEDICAL ETHICS

Identifiers

PMID39181557
PMCPMC11344503

What OpenQuestion holds

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LicenceCC BY-NC
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.