Evidence map›Paper›PMID 41770754›Full record

ReviewPLOS digital health2026

Autism data sharing: Benefits, challenges, and recommendations.

Alexandra Lautarescu, Brett Trost, Azadeh Kushki, Bethany Oakley, Síofra Heraty, David Belton, Alison Boyle, Sarah Douglas, Ciara J Molloy, Rosemary Holt and 9 more

Abstract readReview
In one paragraph

Review in PLOS digital health, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Article
  2. 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

19 authors.

Alexandra LautarescuDepartment of Psychology, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, United Kingdom.ORCID https://orcid.org/0000-0001-7680-8936
Brett TrostPrograms in Molecular Medicine and Genetics & Genome Biology, The Hospital for Sick Children, Toronto, Ontario, Canada.ORCID https://orcid.org/0000-0003-4863-7273
Azadeh KushkiHolland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada.
Bethany OakleyDepartment of Forensic and Neurodevelopmental Sciences, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, United Kingdom.
Síofra HeratyDepartment of Psychological Sciences, Birkbeck, University of London, London, United Kingdom.
David BeltonAIMS-2-Trials Autism Representatives, University of Cambridge, Cambridge, United Kingdom.
Alison BoyleAIMS-2-Trials Autism Representatives, University of Cambridge, Cambridge, United Kingdom.
Sarah DouglasAIMS-2-Trials Autism Representatives, University of Cambridge, Cambridge, United Kingdom.
Ciara J MolloyDepartment of Forensic and Neurodevelopmental Sciences, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, United Kingdom.ORCID https://orcid.org/0000-0002-6178-8861
Rosemary HoltAutism Research Centre, Department of Psychiatry, University of Cambridge, Cambridge, United Kingdom.
Madeleine BloomfieldDepartment of Psychology, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, United Kingdom.
Florence CampanaInstitut Pasteur, Paris, France.
Miro CupakDNAstack, Toronto, Ontario, Canada.
Erica StevensonProvince of Ontario Neurodevelopmental Network Autism Representative, Toronto, Ontario, Canada.
Julian TillmannF. Hoffman-La Roche Ltd, Basel, Switzerland.
Christopher ChathamDNAstack, Toronto, Ontario, Canada.
Evdokia AnagnostouHolland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada.
Dean HartleyAutism Speaks, Washington, D.C., United States of America.
Tony CharmanDepartment of Psychology, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, United Kingdom.ORCID https://orcid.org/0000-0003-1993-6549

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Data sharing is a key element of scientific research, but it is associated with many complex legal, ethical, and practical challenges. These are particularly salient in autism research, where concerns have been raised about researchers' intentions, research priorities not aligning with those of autistic people, and differing opinions within stakeholder communities as to what priorities should be addressed. This review paper was co-produced through an iterative collaborative process to incorporate diverse viewpoints of stakeholder representatives from academia, charity, industry, the medical community, and the autism community. We discuss the main benefits and challenges of autism data sharing and argue that the perspectives of autistic people must be central to discussions around its ethical and technological aspects. We outline recommendations for ethical and responsible data sharing practices and note key developments within the field, including federated data sharing and community platforms and registries.

Identifiers

PMID41770754
PMCPMC12952580

What Socratic holds

Textmetadata
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.