Protocol for a two-arm parallel randomized controlled trial to evaluate patient and researcher co-presentation of research results: the Scleroderma Patient-centered Intervention Network—Patients Alongside Investigators in Research-Sharing (SPIN-PAIRS
Findings will contribute to the evidence base on effective strategies for sharing results with study participants and others with relevant lived experience. Trial registration ISRCTN12805381 ( https://www.isrctn.com/ISRCTN12805381 ).
Authors
- Robin M. Queen (ORCID: https://orcid.org/0000-0001-5181-9049)
- Louis Olagne
- Dominique Farge (ORCID: https://orcid.org/0000-0002-4041-1352)
- Robert Spiera (ORCID: https://orcid.org/0000-0003-2911-6800)
- Amanda Lawrie-Jones
- Damien Vagner (ORCID: https://orcid.org/0000-0003-1621-1251)
- S. Blaise (ORCID: https://orcid.org/0000-0001-7238-112X)
- Diane Collard
- Brigitte Granel-Rey
- Hannah Bowen (ORCID: https://orcid.org/0000-0003-0073-8454)
- Luc Mouthon (ORCID: https://orcid.org/0000-0002-7021-9492)
- Geneviève Gyger
- Lyne Bissonnette
- Laura K. Hummers (ORCID: https://orcid.org/0000-0002-4864-4011)
- Leland W.K. Chung (ORCID: https://orcid.org/0000-0003-0072-6939)
- John Michalski
- Eva Bories
- David Launay (ORCID: https://orcid.org/0000-0003-1840-1817)
- Mandana Nikpour (ORCID: https://orcid.org/0000-0002-6585-5611)
- Kimberly S. Lakin (ORCID: https://orcid.org/0000-0001-9343-5545)
- Nancy Maltez (ORCID: https://orcid.org/0000-0002-8535-4312)
- Michael Hugues
- Susanna Proudman (ORCID: https://orcid.org/0000-0002-3046-9884)
- Vincent Sobanski (ORCID: https://orcid.org/0000-0003-3083-2441)
- Jesslyn Doucette
- Sophie Hu (ORCID: https://orcid.org/0000-0002-2904-8804)
- Eric HACHULLA (ORCID: https://orcid.org/0000-0001-7432-847X)
- Loraine Gauzère
- Vanessa L. Malcarne (ORCID: https://orcid.org/0000-0002-7526-9982)
- María Martín-López (ORCID: https://orcid.org/0000-0002-4218-5731)
- Janet Pope (ORCID: https://orcid.org/0000-0003-1479-5302)
- Regina Faré
- Isabelle J. Marié (ORCID: https://orcid.org/0000-0002-3091-7624)
- Maureen D. Mayes (ORCID: https://orcid.org/0000-0001-5070-2535)
- Suzanne Kafaja
- Claire Adams (ORCID: https://orcid.org/0000-0003-3871-9267)
- Tannvir Desroche (ORCID: https://orcid.org/0000-0002-2142-9186)
- F. Renou
- Sabrina Hoa (ORCID: https://orcid.org/0000-0002-9466-5729)
- NADER A. KHALIDI (ORCID: https://orcid.org/0000-0002-8270-2617)
- Aurélien Guffroy (ORCID: https://orcid.org/0000-0003-0615-5305)
- Lee Shapiro (ORCID: https://orcid.org/0000-0002-6652-3141)
- Ciara N. Magee (ORCID: https://orcid.org/0000-0002-0814-4143)
- G. Pugnet (ORCID: https://orcid.org/0000-0002-2621-204X)
- Linda Kwakkenbos (ORCID: https://orcid.org/0000-0002-1573-4504)
- François Rannou (ORCID: https://orcid.org/0000-0001-8780-4797)
- Robyn K. Wojeck
- Anne Gerber (ORCID: https://orcid.org/0000-0003-4381-8489)
- M. Mourguet
- Daphna Harel (ORCID: https://orcid.org/0000-0001-7015-5989)
- Ken Rozee
- Sindhu R. Johnson (ORCID: https://orcid.org/0000-0003-0591-2976)
- Joanne Manning (ORCID: https://orcid.org/0000-0002-4959-8387)
- Christelle Nguyen (ORCID: https://orcid.org/0000-0001-7141-3230)
- M. D’Onofrio (ORCID: https://orcid.org/0000-0003-2408-5099)
- Catherine Fortuné (ORCID: https://orcid.org/0000-0002-9064-8411)
- Catarina Leite (ORCID: https://orcid.org/0000-0002-4613-0164)
- Alexis Régent (ORCID: https://orcid.org/0000-0002-8136-2454)
- Elana J. Bernstein (ORCID: https://orcid.org/0000-0001-5560-6390)
- Virginia Steen (ORCID: https://orcid.org/0000-0002-6333-0133)
- Monique Hinchcliff (ORCID: https://orcid.org/0000-0002-8652-9890)
- C. Agard
- Benjamin Chaigne (ORCID: https://orcid.org/0000-0001-5448-7860)
- Yvonne Lee (ORCID: https://orcid.org/0000-0002-2105-3393)
- James V. Dunne
- Tatiana Sofia Rodrı́guez-Reyna (ORCID: https://orcid.org/0000-0002-5799-5016)
- Patricia Esmeralda Carreira (ORCID: https://orcid.org/0000-0001-8279-3806)
- Elsa‐Lynn Nassar (ORCID: https://orcid.org/0000-0001-5398-0899)
- Susan J. Bartlett (ORCID: https://orcid.org/0000-0001-9755-2490)
- Pearce Wilcox (ORCID: https://orcid.org/0000-0001-8485-6962)
- Karen Nielsen (ORCID: https://orcid.org/0000-0003-1286-866X)
- Thylbert Deltombe
- Danielle B. Rice (ORCID: https://orcid.org/0000-0001-5615-7005)
- Tracy Frech (ORCID: https://orcid.org/0000-0002-5472-3840)
- Michelle Richard
- Vanessa L. Cook
- Amy Gietzen
- Mary F. Hébert (ORCID: https://orcid.org/0000-0002-2530-8189)
- Paul Legendre (ORCID: https://orcid.org/0000-0003-2787-5491)
- Esther Rodríguez Almazar
- Maggie Larché (ORCID: https://orcid.org/0000-0002-9506-1249)
- Brett D. Thombs (ORCID: https://orcid.org/0000-0002-5644-8432)
- Paul R. Fortin (ORCID: https://orcid.org/0000-0002-7278-2596)
- Benjamin Crichi (ORCID: https://orcid.org/0000-0003-4562-766X)
- Maureen Sauvé (ORCID: https://orcid.org/0000-0002-7919-9926)
- David Robinson (ORCID: https://orcid.org/0000-0002-6615-6054)
- Carlotta Cacciatore
- Kelly Grant (ORCID: https://orcid.org/0000-0001-5319-8127)
- Geneviève Guillot (ORCID: https://orcid.org/0000-0003-3390-4746)
- Andrew Emmett
- Jessica Gordon (ORCID: https://orcid.org/0000-0001-8068-0592)
- Karen Gottesman (ORCID: https://orcid.org/0000-0001-5718-2819)
- Loïc Raffray (ORCID: https://orcid.org/0000-0002-4518-7345)
- Sophie Roux (ORCID: https://orcid.org/0000-0002-7427-9361)
- Alena Ikic
- A. Mékinian (ORCID: https://orcid.org/0000-0003-2849-3049)
- Alessandra Bruns
- Andrea Benedetti (ORCID: https://orcid.org/0000-0002-8314-9497)
- Amanda Wurz (ORCID: https://orcid.org/0000-0002-7804-9811)
- Thierry Martin (ORCID: https://orcid.org/0000-0002-2776-2641)
- Tracy Mieszczak
- John Varga (ORCID: https://orcid.org/0000-0001-6504-2496)
- Marc André
- Floryan Beaslay
- Marie Hudson (ORCID: https://orcid.org/0000-0001-6718-2468)
- Christopher P. Denton (ORCID: https://orcid.org/0000-0003-3975-8938)
- T. Bürger
- Vincent Poindron (ORCID: https://orcid.org/0000-0002-3453-6976)
- P. Smets
- Laurent Alric
- Cassidy Dal Santo
- S. Berthier
- Ariel Masetto
- Joanne Gold
- Tracy Magee
- Jo‐Ann Lapointe McKenzie
- Evelyn Sutton
- Sébastien Rivière (ORCID: https://orcid.org/0000-0001-6328-618X)
- Marie-Eve Carrier
- Hélène Maillard
- Carter Thorne
- Meira Golberg
- M. Lambert (ORCID: https://orcid.org/0000-0002-3485-8238)
- James Stempel
- Yanne Perriault
- Stephanie Gresh
- Karol Bedoya-Carvajal
- Gloria Blecha
- John Malcolmson
- David Murad
- Gaétan Baril
- Maria Dastur
- Sheila Melchor-Díaz
Institutions
- Radboud University Nijmegen (NL)
- University of the Fraser Valley (CA)
- McGill University Health Centre (CA)
- Jewish General Hospital (CA)
- Radboud University Medical Center (NL)
- Centre Hospitalier de l’Université de Montréal (CA)
- McGill University (CA)
Publication Details
- Journal
- Trials
- Published
- 2025-11-12
- DOI
- https://doi.org/10.1186/s13063-025-09256-0
- Citations
- 1
- Primary Topic
- Systemic Sclerosis and Related Diseases
- Type
- article
- Field-Weighted Citation Impact
- 1.47