ArticleDisability and health journal2021
Hashtag who's missing? Lessons for genomic databases.
Article in Disability and health journal, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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
1 citing paper in PubMed.
- Effectiveness of multimodal participant recruitment in SPARK, a large, online longitudinal research study of autism.Journal of clinical and translational science · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
Abstract
Genomic databases support research intended to advance understanding, diagnosis, and treatment of disease. Utility is linked to diversity, and initiatives are seeking to enroll traditionally underrepresented groups such as people with disabilities. Commentators have called for adoption of a participant-centric approach to build trust and address barriers to inclusion. Complexities emerge, however, when minors are enrolled and whose perspective on their condition may with time diverge from their parents' perspective. Public response to MSSNG, a genomic database focused on autism, and public discourse regarding neurodiversity reveal division regarding autism as a difference or identity versus a disease. We explore what it means for genomic databases enrolling individuals, particularly minors, with disabilities to be participant-centric when affected individuals disagree about the nature of their condition and research priorities, offering recommendations for participant engagement and measures when enrolling minors with conditions that are the subject of difference-disease debates.
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.