JGH Foundation logo (square)

Since 1969, the Jewish General Hospital (JGH) Foundation has been a vital source of support for the JGH to enhance its extraordinary patient care, to further scientific discovery and to transform healthcare delivery through innovation. 

The Foundation has supported the post-research dissemination of SPIN’s patient programs since 2018. During that time frame, their generous contribution has helped us secure funding and achieve important milestones. They have played a major role in the launch of SPIN’s tool dissemination platform, SPIN-SHARE, helping us take another step towards fulfilling our mission of supporting people living with scleroderma from around the world by providing rehabilitation and psychosocial online programs free-of-charge. Please see below for a summary of what we managed to accomplish by SPIN project, thanks to their involvement.

Selected Project Accomplishments Since 2018

LEGENDTesting Phase  Testing phase   Number of participants Participants enrolled   Calendar Testing phase duration

SPIN-COVID-19 Logo   SPIN-COVID-19 Cohort

    (Study on mental health concerns 
    during the pandemic)  
    Number of participants 800 enrolled  Calendar March 2020 - Present

For the study, the SPIN Team developed the COVID-19 Fears Questionnaire for Chronic Medical Conditions, the first measure assessing pandemic-related fears among patients vulnerable due to pre-existing illnesses. Results from the validation of the measure can be found here and results of factors associated with COVID-19-related fears can be found here. 800 participants enrolled in the study and were invited to complete a series of questionnaires, initially every 2 weeks, then every 4 weeks. The study’s published results described mental health symptom changes during COVID-19 overall and compared changes in Canada, the USA, the UK, and France (here).  


    (COVID-19 Home Activities Together)
    Testing Phase Full-scale Trial   Number of participants 172 enrolled    
    Calendar March - July 2020 

The trial tested a 4-week (3 sessions per week) group multi-faceted videoconference-based mental health program that included psychological tools to reduce anxiety and tools to support maintaining a daily routine, healthy information management, staying connected with others, and being as physically active as possible. 172 participants from 12 countries were enrolled in the trial. Results showed that the program significantly reduced anxiety and depression symptoms. The SPIN Team offered an extension of the educational segments of the program by offering weekly 5 educational webinars, from February 2nd to March 10th 2021.


    (For self-management)
    Testing Phase Full-scale Trial 
    Calendar Launched: Fall 2023

Thanks to the overwhelmingly positive feedback received from SPIN-CHAT participants, SPIN-SELF is currently being reshaped into a videoconference-based group format. The program provides essential knowledge and coping skills to help better manage day-to-day problems in scleroderma. Each of the 9 modules gives information about a different area (pain, fatigue, sleep, etc.) and teaches self-management techniques that you can implement at home. Groups will be meeting for 8 sessions over the course of 12 weeks and will be guided by a facilitator. Follow our recruitment ads on social media coming soon!


    (For hand function)
    Testing Phase Toolkit released via SPIN-SHARE
    Number of participants 466 enrolled in full-scale trial

Now accessible via the SPIN-SHARE platform, SPIN’s first publicly accessible SPIN toolkit provides exercises to improve hand function with sections to help you develop a personalized program, set goals, and track your progress. Instructional videos demonstrate how to perform each exercise properly with pictures to illustrate common mistakes. Discover 4 modules: Thumb Flexibility & Strength, Finger Bending, Finger Extension, and Wrist Flexibility & Strength. For more information, click here.


    (Scleroderma Support group Leader
    EDucation)  Testing Phase Full-scale trial 
    Number of participants 172 enrolled  Calendar Sept 2019 - July 2021

This 13-week training program provides leaders with information and resources to help them feel more comfortable, confident and supported in their roles, and contribute to a more positive support group experience. In January 2021, the SPIN team enrolled the last group of trainees in the trial. In total, 172 participants will be enrolled during the course of the trial. The trial will be completed in July 2021, with results expected in 2022. Support group leaders or those interested in starting a group, including via videoconference, can click here for more information.


     (For nutrition and diet)
     Testing Phase Cohort Study  Number of participants TBD    
     Calendar January - April 2021

To explore how people with scleroderma find, access, and navigate nutrition information and their perceptions of advantages and disadvantages of different information sources, SPIN conducted a series of 4 videoconference focus groups in 2020. In January 2021, a survey was launched from the SPIN Cohort for a better understanding of the experiences of scleroderma patients with seeking nutrition and diet information and advice. Findings will, eventually, inform the development of a nutrition and diet online program for scleroderma.


    (Physical ACtivity Enhancement)
    Testing Phase Cohort Study  Number of participants 721 enrolled    
    Calendar July - October 2019

Focus groups have been conducted and a survey was administered to over 720 participants. Results from this study were published here and will be used to develop an evidence-based program to support physical activity in scleroderma.

Oral Health    
     Oral Health Study

      Testing Phase Reviewing existing evidence  

SPIN is working with patient partners to develop a model of oral quality of life in scleroderma. Currently the team is reviewing existing evidence, then will develop a survey for the SPIN Cohort that will focus on patient experiences with mouth functional impairment, challenges with hygiene activities, psychological issues related to mouth appearance, access to dental care, and mouth-related symptoms.

SPIN is incredibly grateful for the JGH Foundation’s investment in scleroderma research. To learn more about The JGH Foundation, please visit their website at the following address: https://www.jghfoundation.org/