Evidence map›Paper›PMID 40340935›Full record

ArticleTrials2025

Master protocol for a series of cohort-based randomized controlled trials to test tools to communicate research results to study participants and others with relevant lived experience: the SPIN-CLEAR Trials.

Brett D Thombs, Claire Adams, Elsa-Lynn Nassar, Marie-Eve Carrier, Meira Golberg, Kanika Bharthi, Amanda Wurz, Annabelle South, Linda Kwakkenbos, Sabrina Hoa and 43 more

Registry-linked trialAbstract readClinical Trial Protocol
PubMed Full text at PMC Publisher
In one paragraph

Article in Trials, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT06373263 (A Randomized Controlled Trial to Compare the Effectiveness of Dissemination Tools to Share Research Results With Patients - SPIN-CLEAR Trial #1), which is not on this 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.

NCT06373263 nanot yet recruitingnot on this map

A Randomized Controlled Trial to Compare the Effectiveness of Dissemination Tools to Share Research Results With Patients - SPIN-CLEAR Trial #1

TypeinterventionalSponsorLady Davis InstituteRan2025 to 2026Enrolled128ConditionsScleroderma, Systemic SclerosisArmsPlain-language summary, Dissemination Tool (Infographic)
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

53 authors.

Brett D ThombsLady Davis Institute of the Jewish General Hospital, 3755 Côte-Sainte-Catherine Road, Montreal, QC, H4.83H3 T 1E2, Canada. brett.thombs@mcgill.ca.ORCID http://orcid.org/0000-0002-5644-8432
Claire AdamsLady Davis Institute of the Jewish General Hospital, 3755 Côte-Sainte-Catherine Road, Montreal, QC, H4.83H3 T 1E2, Canada.
Elsa-Lynn NassarLady Davis Institute of the Jewish General Hospital, 3755 Côte-Sainte-Catherine Road, Montreal, QC, H4.83H3 T 1E2, Canada.
Marie-Eve CarrierLady Davis Institute of the Jewish General Hospital, 3755 Côte-Sainte-Catherine Road, Montreal, QC, H4.83H3 T 1E2, Canada.
Meira GolbergLady Davis Institute of the Jewish General Hospital, 3755 Côte-Sainte-Catherine Road, Montreal, QC, H4.83H3 T 1E2, Canada.
Kanika BharthiLady Davis Institute of the Jewish General Hospital, 3755 Côte-Sainte-Catherine Road, Montreal, QC, H4.83H3 T 1E2, Canada.
Amanda WurzSchool of Kinesiology, University of the Fraser Valley, Chilliwack, BC, Canada.
Annabelle SouthMRC Clinical Trials Unit at UCL, Institute of Clinical Trials and Methodology, University College London, London, UK.
Linda KwakkenbosDepartment of Clinical Psychology, Behavioural Science Institute, Radboud University, Nijmegen, the Netherlands.
Sabrina HoaDivision of Rheumatology, Université de Montréal, Centre Hospitalier de L, Montreal, QC, Canada.
Danielle B RiceDepartment of Psychology, St Joseph's Healthcare Hamilton, Hamilton, ON, Canada.
Geneviève GuillotSclérodermie Québec, Longueuil, QC, Canada.
Amanda Lawrie-JonesScleroderma Australia and Scleroderma Victoria, Melbourne, VIC, Australia.
Maureen SauvéScleroderma Society of Ontario and Scleroderma Canada, Hamilton, ON, Canada.
Susan J BartlettDepartment of Medicine, McGill University, Montreal, QC, Canada.
Catherine FortuneOttawa Scleroderma Support Group, Ottawa, ON, Canada.
Amy GietzenNational Scleroderma Foundation, Tri-State Chapter, Buffalo, NY, USA.
Karen GottesmanNational Scleroderma Foundation, Los Angeles, CA, USA.
Marie HudsonLady Davis Institute of the Jewish General Hospital, 3755 Côte-Sainte-Catherine Road, Montreal, QC, H4.83H3 T 1E2, Canada.
Laura K HummersJohns Hopkins University School of Medicine, Baltimore, MD, USA.
Vanessa L MalcarneSan Diego State University, San Diego, CA, USA.
Maureen D MayesUniversity of Texas McGovern School of Medicine, Houston, TX, USA.
Michelle RichardScleroderma Atlantic, Halifax, NS, Canada.
James StempelScleroderma Chicago, Chicago, IL, USA.
Robyn K WojeckAmgen Inc, Thousand Oaks, CA, USA.
Kathleen BlagraveResearch Ethics Board, Centre Intégré Universitaire de Santé Et de Services Sociaux du Centre-Ouest-de-L'Île-de-Montréal, Montreal, QC, Canada.
Jill T BoruffSchulich Library of Physical Sciences, Life Sciences, and Engineering, McGill University, Montreal, QC, Canada.
Vanessa CookLady Davis Institute of the Jewish General Hospital, 3755 Côte-Sainte-Catherine Road, Montreal, QC, H4.83H3 T 1E2, Canada.
Nicole Culos-ReedFaculty of Kinesiology, University of Calgary, Calgary, AB, Canada.
Ole FröbertDepartment of Cardiology, Orebro University Hospital, Orebro, Sweden.
Katie GilliesAberdeen Centre for Evaluation, University of Aberdeen, Aberdeen, UK.
Vera GranikovCentre de Recherche du Centre Hospitalier de L, Université de Montréal, Montreal, QC, Canada.
Lars G HemkensPragmatic Evidence Lab, Research Center for Clinical Neuroimmunology and Neuroscience Basel, University of Basel and University Hospital Basel, Basel, Switzerland.
Elizabeth Yakes JimenezCollege of Population Health, University of New Mexico Health Sciences Center, Albuquerque, NM, USA.
Agnes KocherInstitute of Nursing Science, University of Basel, Basel, Switzerland.
Catarina LeiteUniversity of Minho, Braga, Portugal.
Mathew A W T LimMelbourne Dental School, University of Melbourne, Carlton, Melbourne, VIC, Australia.
Nancy MaltezDepartment of Rheumatology, Ottawa Hospital, Ottawa, ON, Canada.
John MichalskiNational Scleroderma Foundation, Michigan Chapter, Detroit, MI, USA.
Tracy MieszczakScleroderma Support Group, Rochester, NY, USA.
Mwidimi NdosiSchool of Health and Social Wellbeing, University of the West of England, Bristol, UK.
Janet PopeDivision of Rheumatology, St Joseph's Hospital, Western University, London, ON, Canada.
François RannouUniversité Paris Descartes, Université de Paris, Paris, France.
Ken RozeeScleroderma Atlantic, Halifax, NS, Canada.
Sharon E StrausKnowledge Translation Program, Li Ka Shing Knowledge Institute of St. Michael's Hospital, University of Toronto, Toronto, ON, Canada.
Matthew R SydesMRC Clinical Trials Unit at UCL, Institute of Clinical Trials and Methodology, University College London, London, UK.
Lehana ThabaneDepartment of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, ON, Canada.
John VargaDivision of Rheumatology, Department of Internal Medicine, University of Michigan, Ann Arbor, MI, USA.
Tami YapMelbourne Dental School, University of Melbourne, Carlton, Melbourne, VIC, Australia.
Merrick ZwarensteinCentre for Studies in Family Medicine, Department of Family Medicine, Schulich School of Medicine & Dentistry, University of Western Ontario, London, ON, Canada.
Luc MouthonService de Médecine Interne, Centre de Référence Maladies Autoimmunes Et Autoinflammatoires Systémiques Rares d'Ile de France, de l' , Est Et de L'Ouest, Hôpital Cochin, Paris, France.
Andrea BenedettiDepartment of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, QC, Canada.
SPIN Investigators

Funding

CIHR PJT-195879
6 · The paper itself

Abstract

backgroundResearch results are often not communicated to study participants or others with relevant lived experience. Effective communication of research results would help study participants understand their contribution to research and could improve trust in research and likelihood of research participation. Few randomized controlled trials (RCTs), however, have compared the effectiveness of research communication tools, and it is not known which tools work best for different people. We will conduct the Scleroderma Patient-centered Intervention Network-Communicating Latest Evidence and Results (SPIN-CLEAR) trial series via the multi-national SPIN Cohort to compare tool effectiveness. Primary objectives of each RCT will be to compare tools based on (1) information completeness, (2) understandability, and (3) ease of use. We will additionally evaluate comprehension of key aspects of disseminated research; likelihood that participants would enroll in a similar future study; and, for all primary and secondary outcomes, outcomes by participant characteristics (gender, age, race or ethnicity, country, language, education level, health literacy).

methodsAn advisory team of people with systemic sclerosis (SSc, also known as scleroderma) participated in developing research questions, selecting outcomes, and designing the series of parallel-arm RCTs that will each compare two or more tools or tool variations to a plain-language summary comparator; the common comparator will facilitate across-trial comparisons. In each RCT, people with SSc and researchers will select a recent SSc research study to disseminate. Tools will be developed by experienced tool developers and people with SSc. SPIN Cohort participants (current N eligible = 1522 from 50 SPIN sites in Australia, Canada, France, UK, USA) and additional participants recruited via social media and patient organization partners who consent to participate will be randomized to a dissemination tool or plain-language summary comparator and complete outcomes. Analyses will be intent-to-treat and use linear regression models. DISCUSSION: Each trial in the planned series of trials will build upon knowledge from previous trials. Results will contribute to the evidence base on how to best disseminate results to study participants and others with relevant lived experience.

trial registrationClinicalTrials.gov NCT06373263. Registered on April 17, 2024 (first trial in series).

Indexed as

CommunicationInformation DisseminationRandomized Controlled Trials as TopicResearch SubjectsScleroderma, SystemicComprehensionHumansMulticenter Studies as TopicResearch DesignKnowledge translationPatient and public involvementPatient engagementPatient-oriented researchRandomized controlled trialsResearch disseminationSclerodermaSystemic sclerosis

Identifiers

PMID40340935
PMCPMC12060389

What OpenQuestion holds

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LicenceCC BY-NC-ND
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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.