OMERACT Core outcome measurement set for shared decision making in rheumatic and musculoskeletal conditions: a scoping review to identify candidate instruments

Authors: Naye, Florian, Toupin-April, Karine, de Wit, Maarten, LeBlanc, Annie, Dubois, Olivia, Boonen, Annelies, Barton, Jennifer L., Fraenkel, Liana, Li, Linda C., Stacey, Dawn, March, Lyn, Barber, Claire E.H., Hazlewood, Glen Stewart, Guillemin, Francis, Bartlett, Susan J., Berthelsen, Dorthe B., Mather, Kate, Arnaud, Laurent, Akpabio, Akpabio, Adebajo, Adewale, Schultz, Grayson, Sloan, Victor S., Gill, Tiffany K., Sharma, Saurab, Scholte-Voshaar, Marieke, Caso, Francesco, Nikiphorou, Elena, Nasef, Samah Ismail, Campbell, Willemina, Meara, Alexa, Christensen, Robin, Suarez-Almazor, Maria E., Jull, Janet Elizabeth, Alten, Rieke, Morgan, Esi M., El-Miedany, Yasser, Singh, Jasvinder A., Burt, Jennifer, Jayatilleke, Arundathi, Hmamouchi, Ihsane, Blanco, Francisco J., Fernandez, Anthony P., Mackie, Sarah, Jones, Allyson, Strand, Vibeke, Monti, Sara, Stones, Simon R., Lee, Rebecca R., Nielsen, Sabrina Mai, Evans, Vicki, Srinivasalu, Hemalatha, Gérard, Thomas, Demers, Juliette LeBlanc, Bouchard, Roxanne, Stefan, Théo, Dugas, Michèle, Bergeron, Frédéric, Beaton, Dorcas, Maxwell, Lara J., Tugwell, Peter, Décary, Simon

Source: In Seminars in Arthritis and Rheumatism April 2024 65

Sexual Health, Pleasure, Justice, and Well‐Being in People With Rheumatic and Musculoskeletal Diseases: A Scoping Review Protocol.

Authors: Giardulli, Benedetto, Prior, Yeliz, Bumin, Gonca, Kinikli, Gizem I., Prior, James A., Stones, Simon R., Flurey, Caroline, Testa, Marco, Lavender, Andy, Battista, Simone

Source: Musculoskeletal Care; Mar2025, Vol. 23 Issue 1, p1-6, 6p

Subject Terms: SOCIAL justice, SEXUAL excitement, MUSCULOSKELETAL system diseases, QUALITY of life, SEXUAL health, WELL-being, RHEUMATISM

Improving musculoskeletal health for children and young people – A ‘call to action’

Authors: Ang, Elizabeth, Charuvanij, Sirirat, Costello, Wendy, Kinnunen, Marja, Lewandowski, Laura B., Migowa, Angela, Stones, Simon R., Vilaiyuk, Soamarat, Webb, Kate, Foster, Helen E., Scott, Christiaan, Tiderius, Carl J., Dobbs, Matthew B.

Source: In Best Practice & Research Clinical Rheumatology October 2020 34(5)

EULAR recommendations for the involvement of patient research partners in rheumatology research: 2023 update.

Authors: de Wit, Maarten, Aouad, Krystel, Elhai, Muriel, Benavent, Diego, Bertheussen, Heidi, Blackburn, Steven, Böhm, Peter, Duarte, Catia, Falahee, Marie, Karlfeldt, Susanne, Kiltz, Uta, Mateus, Elsa F., Richards, Dawn P., Rodríguez-Carrio, Javier, Sagen, Joachim, Shumnalieva, Russka, Stones, Simon R., Tas, Sander W., Tillett, William, Vieira, Ana

Source: Annals of the Rheumatic Diseases; Nov2024, Vol. 83 Issue 11, p1443-1453, 11p

Patient authorship of medical research publications: An evolution, revolution, and solution?

Authors: Woolley, Karen L.^1,2 (AUTHOR) kwoolley535@gmail.com, Stones, Simon R.³ (AUTHOR), Stephens, Richard⁴ (AUTHOR), Bharadia, Trishna⁵ (AUTHOR), Yamamoto, Beverley^6,7,8 (AUTHOR), Geissler, Jan⁹ (AUTHOR), Yang, Bella¹⁰ (AUTHOR), Oliver, Jacqui³ (AUTHOR), Boughey, Amanda³ (AUTHOR), Elliott, Catherine³ (AUTHOR), Dormer, Laura¹¹ (AUTHOR), Walker, Joanne¹¹ (AUTHOR), Lobban, Dawn³ (AUTHOR)

Source: Learned Publishing. Jul2024, Vol. 37 Issue 3, p1-16. 16p.

Subject Terms: *Authorship, *Medical publishing, Patient participation, Medical research, Research personnel

Chapter 24 - The patients'/parents' voice within pediatric drug research

Authors: Nafria Escalera, Begoña, Bernays, Sarah, Conway, Magda, Getz, Kenneth, Jafta, Lungile, Stones, Simon R.

Source: In Essentials of Translational Pediatric Drug Development 2024:629-661

Original Abstracts from the 20th Annual Meeting of ISMPP.

Authors: Palmisano, Steve, Cullinan, Emily, Grospitch, Danielle, Woolley, Karen, Boughey, Amanda, McSorley, Sarah, Stones, Simon R., Oliver, Jacqui, Dixit, Jyotsana, Gutha, Himabindu, Pulate, Vrushali, Asthana, Shreyasi, Chengalva, Prasanthi, Patil, Madhavi, Shah, Vatsal, Norwood, John, Penovich, Patricia, Glauser, Tracy, Long, Lucretia, Guerra, Cyndi

Source: Current Medical Research & Opinion; 2024 Suppl 2, Vol. 40, p5-40, 36p

Subject Terms: CASTRATION-resistant prostate cancer, GENERATIVE artificial intelligence, VOICE disorders, SCIENTIFIC communication, SCIENTIFIC literacy, SCIENTIFIC literature, ANNUAL meetings

Young People’s, Parents’, and Professionals’ Views on Required Components of Mobile Apps to Support Self-Management of Juvenile Arthritis: Qualitative Study

Authors: Waite-Jones, Jennifer M, Majeed-Ariss, Rabiya, Smith, Joanna, Stones, Simon R, Van Rooyen, Vanessa, Swallow, Veronica

Source: JMIR mHealth and uHealth, Vol 6, Iss 1, p e25 (2018)

Subject Terms: Information technology, T58.5-58.64, Public aspects of medicine, RA1-1270

File Description: electronic resource

Relation: http://mhealth.jmir.org/2018/1/e25/; https://doaj.org/toc/2291-5222

Access URL: https://doaj.org/article/d7ccc7c6384d44029cf4f67803001ef6

Contributors

Authors: Adeyeye, Moji, Ainsworth, Sammy, Al-Obaidi, Issraa, Allegaert, Karel, Amigoni, Angela, Annaert, Pieter, Athanassiou, Dimitris, Attar, Sabah, Barrett, Jeffrey S., Barrick, Daisy, Bassi, Adit, Batchelor, Hannah, Bax, Ralph, Bernays, Sarah, Bhatnagar, Melanie E., Bierer, Barbara E., Borens, Amanda, Borrell-Pages, Maria, Bruyne, Pauline De, Burckart, Gilbert J., Carmichael, Samantha, Cavaller-Bellaubi, Maria, Chatterjee, Sagnik, Cheng, Katharine, Conway, Magda, Corriol-Rohou, Solange, Croubels, Siska, De Boevre, Marthe, De Cock, Pieter A., Deforce, Dieter, Degraeuwe, Eva, De Schaepdrijver, Luc, De Sutter, Pieter-Jan, Devreese, Mathias, De Wildt, Saskia N., Dews, Sally Anne, Dhaenens, Maarten, Dossche, Lien, Driessens, Mariette, Duffy, Ciara, Evett, Sophie, Garcia-Bournissen, Facundo, Gasthuys, Elke, Getz, Kenneth, Goessens, Tess, Green, Dionna J., Harada, Tsutomu, Hedley, Victoria, Hermans, Eline, Heslop, Emma, Huitema, Alwin, Impens, Francis, Irvin, Anna, Ito, Shinya, Jafta, Lungile, Jennings, Kim, Kearns, Gregory L., Kienesberger, Anita, Klein, Agnes V., Kruger, Mariana, Langeraert, Jonas, Leary, Rebecca, Lepola, Pirkko, Matsui, Kenji, McCune, Susan, Metsvaht, Tuuli, Michelet, Robin, Nafria Escalera, Begoña, Nakamura, Hidefumi, Nelson, Robert, Oualha, Mehdi, Pearson, Andy, Pero-Gascon, Roger, Prasad, Bhagwat, Preston, Jennifer, Reaman, Gregory, Rizzari, Carmelo, Saito, Jumpei, Samardzic, Janko, Sato, Junko, Schrier, Lenneke, Scobie, Nicole, Sen, Anando, Smeets, Nori, Smits, Anne, Snyder, Donna L., Stitt, Gideon, Stones, Simon R., Straub, Volker, Tack, Bieke, Toelen, Jaan, Turner, Mark A., Turner, Katie, van den Anker, John, Ventrella, Domenico, Verhelst, Sigrid, Vermeulen, Eric, Vermeulen, An, Walle, Johan Vande, Wan, Mandy, Weinman, Ariane, Yao, Lynne, Zuppa, Athena F., Zwaan, C. Michel

Source: In Essentials of Translational Pediatric Drug Development 2024:xi-xv

EULAR points to consider for therapeutic drug monitoring of biopharmaceuticals in inflammatory rheumatic and musculoskeletal diseases.

Authors: Krieckaert, Charlotte L. M., van Tubergen, Astrid, Gehin, Johanna Elin, Hernández-Breijo, Borja, Mélédo, Guillaume Le, Balsa, Alejandro, Böhm, Peter, Cucnik, Sasa, Elkayam, Ori, Goll, Guro L., Hooijberg, Femke, Jani, Meghna, Kiely, Patrick D. W., McCarthy, Neil, Mulleman, Denis, Navarro-Compán, Victoria, Payne, Katherine, Perry, Martin E., Plasencia-Rodriguez, Chamaida, Stones, Simon R.

Source: Annals of the Rheumatic Diseases; Jan2023, Vol. 82 Issue 1, p65-73, 9p

EULAR points to consider when analysing and reporting comparative effectiveness research using observational data in rheumatology.

Authors: Courvoisier, Delphine Sophie, Lauper, Kim, Kedra, Joanna, de Wit, Maarten, Fautrel, Bruno, Frisell, Thomas, Hyrich, Kimme L., Iannone, Florenzo, Machado, Pedro M., Ørnbjerg, Lykke Midtbøll, Rotar, Ziga, Santos, Maria Jose, Stamm, Tanja A., Stones, Simon R., Strangfeld, Anja, Bergstra, Sytske Anne, Landewé, Robert B. M., Finckh, Axel

Source: Annals of the Rheumatic Diseases; Jun2022, Vol. 81 Issue 6, p780-785, 6p

Subject Terms: RESEARCH evaluation, RHEUMATOLOGY, MEDICAL care research, POLICY sciences

Analysing and reporting of observational data: a systematic review informing the EULAR points to consider when analysing and reporting comparative effectiveness research with observational data in rheumatology.

Authors: Lauper, Kim, Kedra, Joanna, de Wit, Maarten, Fautrel, Bruno, Frisell, Thomas, Hyrich, Kimme L., Iannone, Florenzo, Machado, Pedro M., Ørnbjerg, Lykke M., Rotar, Ziga, Santos, Maria Jose, Stamm, Tanja A., Stones, Simon R., Strangfeld, Anja, Landewé, Robert B. M., Finckh, Axel, Bergstra, Sytske Anne, Courvoisier, Delphine S.

Source: RMD Open; Dec2021, Vol. 7 Issue 3, p1-9, 9p

Original abstracts from the 2021 European Meeting of ISMPP.

Authors: McKinnon, Colin, Philippon, Valérie, Maritsch, Friedrich, Cil, Ingeborg, Potash, Jesse, Pavlova, Borislava, D'Cunha, Trinka, Rajeev, Pinki, Wieting, Susan, Setlur, Sunita, Bueno, Ericka, Bertheleme, Nicolas, Wager, Kim, Harvey, Elizabeth, Blumer, Zoe, Carthy, Jon, Kandola, Suki, Kruger, Paola, Morgan, Kristyn, Stones, Simon R.

Source: Current Medical Research & Opinion; 2021 Supplement, Vol. 37, p21-39, 19p

Subject Terms: AZITHROMYCIN, COVID-19 pandemic, COVID-19 treatment, WORLD Wide Web

2019 EULAR points to consider for the assessment of competences in rheumatology specialty training.

Authors: Sivera, Francisca, Alunno, Alessia, Najm, Aurélie, Avcin, Tadej, Baraliakos, Xenofon, Bijlsma, Johannes W., Badreh, Sara, Burmester, Gerd, Cikes, Nada, Da Silva, Jose A. P., Damjanov, Nemanja, Dougados, Maxime, Dudler, Jean, Edwards, Christopher J., Iagnocco, Annamaria, Lioté, Frédéric, Nikiphorou, Elena, van Onna, Marloes, Stones, Simon R., Vassilopoulos, Dimitrios

Source: Annals of the Rheumatic Diseases; Jan2021, Vol. 80 Issue 1, p65-70, 6p

Subject Terms: RESEARCH, FOCUS groups, RHEUMATOLOGY, TIME, RESEARCH methodology, CURRICULUM, EVALUATION research, MEDICAL cooperation, EDUCATIONAL tests & measurements, COMPARATIVE studies, CLINICAL competence, JOB performance

Geographic Terms: EUROPE

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Ensuring young voices are heard in core outcome set development: international workshops with 70 children and young people.

Authors: Sherratt, Frances C., Bagley, Heather, Stones, Simon R., Preston, Jenny, Hall, Nigel J., Gorst, Sarah L., Young, Bridget

Source: Research Involvement & Engagement; 5/6/2020, Vol. 6 Issue 1, p1-10, 10p

Subject Terms: ADULT education workshops, AUDITORY hallucinations, RESEARCH teams, MONETARY incentives, TREATMENT effectiveness

User testing digital, multimedia information to inform children, adolescents and their parents about healthcare trials.

Authors: Sheridan, Rebecca, Martin-Kerry, Jacqueline, Watt, Ian, Higgins, Steven, Stones, Simon R, Taylor, Danielle Horton, Knapp, Peter

Source: Journal of Child Health Care; Sep2019, Vol. 23 Issue 3, p468-482, 15p

How to navigate the ethical review of research.

Authors: Davies, Hugh T., Phillips, Bob, Preston, Jennifer, Stones, Simon R.

Source: Archives of Disease in Childhood; Jul2019, Vol. 104 Issue 7, p697-700, 4p, 1 Diagram

Subject Terms: MEDICAL research ethics, PARTICIPANT-researcher relationships, HUMAN research subjects, ETHICS

Framework to help design and review research involving children.

Authors: Phillips, Bob, Davies, Hugh T., Preston, Jennifer, Stones, Simon R.

Source: Archives of Disease in Childhood; Jun2019, Vol. 104 Issue 6, p601-604, 4p

Subject Terms: DESIGN research, CHILDREN, CLINICAL competence, MEDICAL research, PEDIATRICS, RESEARCH funding, RESEARCH ethics, RISK assessment, PATIENT participation, PATIENT selection

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