SUPPORT FROM THE JEWISH GENERAL HOSPITAL FOUNDATION
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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
LEGEND:
Testing phase
Participants enrolled
Testing phase duration
SPIN-COVID-19 Cohort
(Study on mental health concerns
during the pandemic)
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).
800 enrolled
March 2020 - Present
SPIN-CHAT Trial
(COVID-19 Home Activities Together)
172 enrolled
Full-scale Trial
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.
SPIN-SELF Trial
(For self-management)
Full-scale Trial
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!
SPIN-HAND Toolkit
(For hand function)
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.
Toolkit released via SPIN-SHARE
466 enrolled in full-scale trial
SPIN-SSLED Trial
(Scleroderma Support group Leader
EDucation)
172 enrolled
Full-scale Trial
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.
SPIN-DINE Study
(For nutrition and diet)
TBD
Sept 2019 - July 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.
Cohort Study
SPIN-PACE Study
(Physical ACtivity Enhancement)
721 enrolled
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.
Cohort Study
Oral Health Study
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/