top of page

Name: Linda Kwakkenbos

Email Address:

Position: Co-Director of SPIN; Lecturer at Radboud University 


Dr. Linda Kwakkenbos obtained her PhD in Social Science at Radboud University Nijmegen, the Netherlands in 2013. After completion of her PhD work, she started working with Dr. Brett Thombs at McGill University as a post-doctoral fellow to continue to pursue her research related to psychosocial and quality of life issues among scleroderma patients. Dr. Kwakkenbos is the Co-Director of the Scleroderma Patient-centered Intervention Network (SPIN), an international team devoted to developing and testing online tools to support well-being among people with scleroderma. Dr. Kwakkenbos received a Postdoctoral Fellowship from the Fonds de la Recherche en Santé Québec (2013-2015) and was awarded the prestigious Banting Postdoctoral Fellowship from the Canadian Institutes of Health Research (2015-2017).


Dr. Kwakkenbos is currently a Lecturer at the Department of Clinical Psychology of Radboud University. She teaches in a number of courses in the Psychology Bachelor and Master programs, including research, communication and diagnostic skills trainings. Dr. Kwakkenbos’ research focuses on the development and testing of patient-reported outcome measures, novel research methodologies, and the development of interventions that help contribute to better disease management in chronic diseases, focusing on rare diseases. She also co-leads, with Dr. Thombs, the development of an extension to the CONSORT reporting guideline for RCTs using cohorts and routinely collected health data.


- Outstanding (top 5%) Reviewer for Arthritis Care & Research (top 5 cited rheumatology journal). 2015; 2016

- 4th Systemic Sclerosis World Congress Best Abstract Award. 2016

- EULAR Abstract Awards, Health Professionals in Rheumatology. 2015

- NVLE Award 2013. Dutch patient organization for systemic autoimmune diseases award for top young investigator (€2500). 2013

- Canadian Institutes of Health Research (CIHR), Institute of Musculoskeletal Health and Arthritis, Institute Community Support Travel Award. 2013

- NVLE Travel Award. Dutch patient organization for systemic autoimmune diseases (NVLE) award. 2012

- NVLE Travel Award. Dutch patient organization for systemic autoimmune diseases (NVLE) award. 2011

Publications (selected):

Kwakkenbos L, Juszczak E, Hemkens LG, Sampson M, Fröbert O, Relton C, Gale C, Zwarenstein M, Langan SM, Moher D, Boutron I, Ravaud P, Campbell MK, Mc Cord KA, van Staa TP, Thabane L, Uher R, Verkooijen HM, Benchimol EI, Erlinge D, Sauvé M, Torgerson D, Thombs BD. Protocol for the Development of a CONSORT extension for RCTs using cohorts and routinely collected health data. Res Integr Peer Rev. In Press.


Thombs BD, Kwakkenbos L, Levis AW, Benedetti A. Overestimation of prevalence based on self-report screening questionnaires: the problem and potential solutions. CMAJ. 2018;190:E44-9.


Kwakkenbos L, Thombs BD, Khanna D, Carrier ME, Baron M, Furst D, Gottesman K, van den Hoogen FHJ, Malcarne VL, Mayes MD, Mouthon L, Nielson WR, Poiraudeau S, Riggs R, Sauvé M, Wigley F, Hudson M, Bartlett SJ, SPIN investigators. Performance of the Patient-Reported Outcomes Measurement Information System-29 in scleroderma: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort Study. Rheumatology. 2017; 56:1302-11.


Kwakkenbos L, Delisle VC, Fox RS, Gholizadeh S, Jewett LR, Levis B, Milette K, Mills SD, Malcarne VL, Thombs BD. Psychosocial aspects of scleroderma. Rheum Dis Clin North Am. 2015;41:519-28.


Kwakkenbos L, Jewett LR, Baron M, Bartlett SJ, Furst D, Gottesman K, Khanna D, Malcarne VL, Mayes MD, Mouthon L, Poiraudeau S, Sauve M, Nielson WR, Poole JL, Assassi S, Boutron I, Ells C, van den Ende CHM, Hudson M, Impens A, Körner A, Leite C, Costa Maia A, Mendelson C, Pope J, Steele RJ, Suarez-Almazor ME, Ahmed S, Coronado-Montoya S, Delisle VC, Gholizadeh S, Jang Y, Levis B, Milette K, Mills SD, Razykov I, Fox RS, Thombs BD. The Scleroderma Patient-centered Intervention Network (SPIN) Cohort: Protocol for a cohort multiple randomized controlled trial (cmRCT) design to support trials of psychosocial and rehabilitation interventions in a rare disease context. BMJ Open. 2013;3:e003563


Presentations (selected):

Kwakkenbos L. Obtaining ethics approval for the cmRCT design from 39 ethics committees in 5 countries: a challenge? 2nd International TwiCs Symposium -  Ethics of 'Trials within Cohorts' (TwiCs). 2017.


Kwakkenbos L, Thombs BD, Bartlett SJ, Carrier ME, Hudson M, Mouthon L, Malcarne V, Sauve M, Khanna D, SPIN investigators. The PROMIS-29 in Systemic Sclerosis: Associations with Clinical Characteristics in the Scleroderma Patient-Centered Intervention Network (SPIN) Cohort. American College of Rheumatology/Association for Rheumatology Health Professionals Annual Scientific Meeting, San Francisco, CA, USA. 2015.


Kwakkenbos L, Minton O, Stone PC, Alexander S, Baron M, Hudson M, Thombs BD. Identifying clinically significant fatigue in rheumatic diseases: a case-definition approach. EULAR Congress 2015, Rome, Italy. Jun 2015.


Kwakkenbos L, Thombs BD. Leveraging an innovative trial design for pragmatic evaluations of psychological interventions: the cohort multiple randomized controlled trial (cmRCT) design. Appearance Matters 6, Bristol, UK. Jul 2014.


Kwakkenbos L. Measurement considerations in cross-national studies: Translation and assessment of metric equivalences. EULAR Congress 2014, Paris, France. Jun 2014.


bottom of page