Publications 2016

INVITED SPEAKER PRESENTATIONS 2016

1. Kwakkenbos L. Managing fatigue. 2016 Scleroderma National Conference, Scleroderma Society of Canada, Montreal, Quebec, Canada. Sept 17, 2016.

2. Jewett LR. Body image distress. 2016 Scleroderma National Conference, Scleroderma Society of Canada, Montreal, Quebec, Canada. Sept 17, 2016.

3. Delisle VC, Gumuchian S. Support groups. 2016 Scleroderma National Conference, Scleroderma Society of Canada, Montreal, Quebec, Canada. Sept 17, 2016.

4. Thombs B. Making tough healthcare decisions to optimize your health and well-being: A toolkit. Scleroderma Foundation Annual Patient Conference. New Orleans, Louisiana, USA. July 2016.

5. Delisle VC. The Scleroderma Support Group Survey: Understanding people's experiences with scleroderma support groups. Scleroderma Foundation Annual Patient Conference. New Orleans, Louisiana, USA. July 31, 2016.

6. Jewett LR, Gholizadeh S. Body image distress in scleroderma. Scleroderma Foundation Annual Patient Conference. New Orleans, Louisiana, USA. July 30, 2016.

7. Kwakkenbos L. Coping with the everyday challenges of scleroderma. 3rd Systemic Sclerosis World Congress. Lisbon, Portugal. February 2016.

8. Delisle VC. Do support groups help? 3rd Systemic Sclerosis World Congress. Lisbon, Portugal. February 2016.

Publications 2015

INVITED SPEAKER PRESENTATIONS 2015

1. Challenges in rare disease research. iSPIN: Combining Forces. Vrije Universiteit, Amsterdam, the Netherlands, October 2, 2015.

2. Gholizadeh S, Jewett LR. Body image distress in scleroderma. 2015 Scleroderma National Conference, Scleroderma Society of Canada, Hamilton, Ontario, Canada. September 19, 2015.

3. Delisle VC, Gumuchian ST. The Scleroderma Support Group Survey: Understanding people’s experiences with scleroderma. 2015 Scleroderma National Conference, Scleroderma Society of Canada, Hamilton, Ontario, Canada. September 19, 2015.

4. Empowering patients with rare diseases: The Scleroderma Patient-centered Intervention Network. Canadian Organization for Rare Diseases, Rare Disease Day Conference 2015. Toronto, Ontario, Canada. March 7, 2015.

Publications 2014

INVITED SPEAKER PRESENTATIONS 2014

1. Kwakkenbos L. Overcoming barriers to evaluating psychological interventions: the cohort multiple randomized controlled trial (cmRCT) design. Appearance Matters: An International Conference about the Impact of Appearance in our Society, Kristianstad, Sweden, Dec 2014.

2. Kwakkenbos L. Ethical considerations in pre-consent randomization models. Trials within Cohorts Symposium, London School of Hygiene & Tropical Medicine, November 10-11, 2014.

3. Thombs BD. The cmRCT design in a rare disease context: The Scleroderma Patient-centered Intervention Network. Trials within Cohorts Symposium, London School of Hygiene & Tropical Medicine, November 10-11, 2014.

4. Thombs BD. A hydrid cohort-trial design for internet-based outcome data collection: The Scleroderma Patient-centered Intervention Network. Lupus 2014, Quebec City, Quebec, Canada, September 2014.

 

Publications 2013

INVITED SPEAKER PRESENTATIONS 2013

1. Thombs BD. How can direct patient collaboration increase relevance and value of research projects: the Scleroderma Patient-Centered Intervention Network. Canadian Organization for Rare Disorders 5th Rare Disease Day Conference. Toronto, Ontario, Canada. February 28, 2013. 

2. Thombs BD. The Scleroderma Patient-centered Intervention Network (SPIN): an international partnership to develop, test, and deliver psychosocial and rehabilitation services. Mexican College of Rheumatology, National Institute of Medical Sciences and Nutrition, Mexico City, Mexico. July 3, 2013.

3. Kwakkenbos L. The Scleroderma Patient-centered Intervention Network (SPIN). Scleroderma Society UK Annual General Meeting, London, United Kingdom, June 29, 2013.

4. Kwakkenbos L. A Novel Approach for Pragmatic Evaluations of Psychological Interventions: the Cohort Multiple Randomized Controlled Trial (cmRCT) Design. Center for Appearance Research, University of the West of England, Bristol, United Kingdom, June 28, 2013.

5. Kwakkenbos L, Thombs BD. Novel approaches for evaluating psychological interventions: the cohort multiple randomized controlled trial (cmRCT) design. Canadian Psychological Association Convention, Quebec City, Canada. Jun 2013. 

6. Thombs BD. The Scleroderma Patient-centered Intervention Network (SPIN): an international partnership to develop, test, and deliver psychosocial and rehabilitation services in a rare disease context. Institut Cochin, Institute de Recherche biomédicale, Paris, France. January 18, 2013.

7. Thombs BD. The Scleroderma Patient-centered Intervention Network. Scleroderma Society of Canada, 14th Annual Conference. Hamilton, Ontario, Canada. September 28, 2013.

Publications 2012

INVITED SPEAKER PRESENTATIONS 2012

1. Thombs BD. Scleroderma Patient-centered Intervention Network (SPIN). Scleroderma Society of Canada, 13th Annual Conference. Vancouver, British Columbia, Canada. September 28, 2012. 

2. Thombs BD. The Scleroderma Patient-centered Intervention Network. 2012 Rare Disease Day Conference: Innovations in Research, Therapies and Policy for Rare Disorders.Canadian Organization for Rare Disorders. Ottawa, Ontario, Canada. March 1, 2012. 

3. Thombs BD. Using the cmRCT model in a rare disease context: the Scleroderma Patient-centered Intervention Network. Cohort Multiple Randomised Controlled Trial (cmRCT) Design Workshop. The University of Sheffield, School of Health and Related Research, Public Health Section, Sheffield, United Kingdom. July 6, 2012. 

4. Jewett LR. The Scleroderma Patient-centered Intervention Network: internet-based management of body image distress. Scleroderma Educational Forum. Scleroderma Society of Ontario / Scleroderma Foundation. Niagara Falls, New York, USA. October 20, 2012. 

5. Jewett LR. “SPIN” – Managing depression and body image. Scleroderma Society of Canada, 13th Annual Conference. Vancouver, British Columbia, Canada. September 29, 2012.