ArticleAlzheimer's & dementia : the journal of the Alzheimer's Association2022
Putting participants and study partners FIRST when clinical trials end early.
Article in Alzheimer's & dementia : the journal of the Alzheimer's Association, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
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.
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.
Who cites it
7 citing papers in PubMed.
- Public and participant involvement as a pathway to inclusive dementia research.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- Respectful closure of a CEnR DNA integrity study: A bridge to sustained interactions with research participants.Journal of clinical and translational science · 2025Article
- Lessons Learned from Approval of Aducanumab for Alzheimer's Disease.Annual review of medicine · 2024Review
- Better recognition for research participants: what society should learn from covid-19.BMJ (Clinical research ed.) · 2023Article
- Putting participants and study partners FIRST when clinical trials end early.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2022Article
- Decision making in clinical trials: Interim analyses, innovative design, and biomarkers.Alzheimer's & dementia (New York, N. Y.)Article
- Institutional Review Board Obligations Regarding Study Funding Sufficiency.Ethics & human researchArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
20 authors.
Funding
Abstract
Between 2018 and 2019, multiple clinical trials ended earlier than planned, resulting in calls to improve communication with and support for participants and their study partners ("dyads"). The multidisciplinary Participant Follow-Up Improvement in Research Studies and Trials (Participant FIRST) Work Group met throughout 2021. Its goals were to identify best practices for communicating with and supporting dyads affected by early trial stoppage. The Participant FIRST Work Group identified 17 key recommendations spanning the pre-trial, mid-trial, and post-trial periods. These focus on prospectively allocating sufficient resources for orderly closeout; developing dyad-centered communication plans; helping dyads build and maintain support networks; and, if a trial stops, informing dyads rapidly. Participants and study partners invest time, effort, and hope in their research participation. The research community should take intentional steps toward better communicating with and supporting participants when clinical trials end early. The Participant FIRST recommendations are a practical guide for embarking on that journey.
Indexed as
Identifiers
What OpenQuestion holds
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.