Evidence map›Paper›PMID 41043142›Full record

ArticleJMIR research protocols2025

A Dual In-Person and Remote Assessment Approach to Developing Digital End Points Relevant to Autism and Co-Occurring Conditions: Protocol for a Multisite Observational Study.

Isabel Yorke, Charlotte A Boatman, Akash Roy Choudhury, Bethany Oakley, Pauline Conde, Heet Sankesara, Yatharth Ranjan, Zulqarnain Rashid, Judith Dineley, Johnny Downs and 8 more

Abstract readClinical Trial Protocol
In one paragraph

Article in JMIR research protocols, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

18 authors.

Isabel YorkeDepartment of Child and Adolescent Psychiatry, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom.ORCID 0000-0001-8603-0910
Charlotte A BoatmanDepartment of Forensic and Neurodevelopmental Sciences, Institute of Psychiatry, Psychology, and Neuroscience, King's College London, London, United Kingdom.ORCID 0000-0002-4634-5835
Akash Roy ChoudhuryDepartment of Biostatistics and Health Informatics, Institute of Psychiatry, Psychology, and Neuroscience, King's College London, London, United Kingdom.ORCID 0000-0003-3946-6273
Bethany OakleyDepartment of Forensic and Neurodevelopmental Sciences, Institute of Psychiatry, Psychology, and Neuroscience, King's College London, London, United Kingdom.ORCID 0000-0002-1968-134X
Pauline CondeDepartment of Biostatistics and Health Informatics, Institute of Psychiatry, Psychology, and Neuroscience, King's College London, London, United Kingdom.ORCID 0000-0003-0513-0915
Heet SankesaraDepartment of Biostatistics and Health Informatics, Institute of Psychiatry, Psychology, and Neuroscience, King's College London, London, United Kingdom.ORCID 0000-0002-9126-5615
Yatharth RanjanDepartment of Biostatistics and Health Informatics, Institute of Psychiatry, Psychology, and Neuroscience, King's College London, London, United Kingdom.ORCID 0000-0003-3079-3120
Zulqarnain RashidDepartment of Biostatistics and Health Informatics, Institute of Psychiatry, Psychology, and Neuroscience, King's College London, London, United Kingdom.ORCID 0000-0002-6843-9920
Judith DineleyCAMHS Digital Lab, Department of Child and Adolescent Psychiatry, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, United Kingdom.ORCID 0000-0001-5541-6853
Johnny DownsCAMHS Digital Lab, Department of Child and Adolescent Psychiatry, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, United Kingdom.ORCID 0000-0002-8061-295X
Christopher H ChathamCurrent Affiliation: Biomarker Research, Shionogi, Inc, Florham Park, NJ, United States.ORCID 0000-0003-4427-8285
Nicholas CumminsCAMHS Digital Lab, Department of Child and Adolescent Psychiatry, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, United Kingdom.ORCID 0000-0002-1178-917X
Amos FolarinDepartment of Biostatistics and Health Informatics, Institute of Psychiatry, Psychology, and Neuroscience, King's College London, London, United Kingdom.ORCID 0000-0002-0333-1927
Eva LothDepartment of Forensic and Neurodevelopmental Sciences, Institute of Psychiatry, Psychology, and Neuroscience, King's College London, London, United Kingdom.ORCID 0000-0001-9458-9167
Jan BuitelaarDepartment of Cognitive Neuroscience, Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Nijmegen, The Netherlands.ORCID 0000-0001-8288-7757
Declan MurphyDepartment of Forensic and Neurodevelopmental Sciences, Institute of Psychiatry, Psychology, and Neuroscience, King's College London, London, United Kingdom.ORCID 0000-0002-6664-7451
Richard DobsonDepartment of Biostatistics and Health Informatics, Institute of Psychiatry, Psychology, and Neuroscience, King's College London, London, United Kingdom.ORCID 0000-0003-4224-9245
Emily SimonoffDepartment of Child and Adolescent Psychiatry, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, United Kingdom.ORCID 0000-0002-5450-0823

Funding

Medical Research Council MR/Y030788/1
6 · The paper itself

Abstract

backgroundResearch priorities for autistic people include developing effective interventions for the numerous challenges affecting their daily living, for example, mental health problems, sleep difficulties, and social well-being. However, clinical research progress is limited by a lack of validated objective measures that represent target outcomes for improvement. Digital technologies, including wearable devices and smartphone apps, provide opportunities to develop novel measures that may reflect everyday experience and complement key clinical assessments. However, little is known about the acceptability and feasibility of implementing digital data collection in this population.

objectiveThe primary objective of this study is to evaluate the usability, acceptability, adherence, and feasibility of a dual in-person and remote (ie, at-home) protocol. Secondarily, we aim to explore the properties of certain resulting data with a view to developing novel digital end points for key target outcomes, including social communication, sleep, and mental health.

methodsEligible autistic and nonautistic in the AIMS Longitudinal European Autism Project were invited to participate in a digitally augmented in-person Autism Diagnostic Observation Schedule-2 (ADOS-2) and a 28-day remote measurement (RM) protocol involving wearing a Fitbit device, downloading a passive smartphone data collection app, and using 2 active reporting apps.

resultsThe first AIMS Longitudinal European Autism Project study participants were enrolled in September 2021 (in-person component) and March 2022 (RM component). To date, 190 participants have taken part in the digitally augmented ADOS-2 component, and 86 participants have been enrolled for the RM protocol. Recruitment is now complete with some RM data collection ongoing until August 2025. Data analysis has commenced, including qualitative framework analysis of feedback interview data coproduced with autism community members, exploration of acceptability and feasibility metrics, pipeline development for ADOS-2 speech analysis, and RM sleep measures.

conclusionsThis study lays important groundwork in understanding the acceptability and feasibility of in-person and remotely implemented digital measurement procedures to capture meaningful outcomes in domains important to improving everyday life for autistic people. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/71145.

Indexed as

Autistic DisorderHouse CallsTelemedicineAdolescentAdultChildFeasibility StudiesFemaleFocus GroupsHumansLongitudinal StudiesMaleMobile ApplicationsNeuropsychological TestsObservational Studies as TopicSmartphoneautismdigital end pointsmental healthremote measurement technologysleepwearables

Identifiers

PMID41043142
PMCPMC12534762

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Registered trials

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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.