SPIN-COVID-19 Cohort

    (Study on mental health concerns 
    during the pandemic)  
     800 enrolled   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).  

   SPIN-CHAT Trial

    (COVID-19 Home Activities Together)
     Full-scale Trial    172 enrolled    
     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 2^nd to March 10^th 2021.

   SPIN-SELF Trial

    (For self-management)
     Pilot study 
     Launching: August 2021

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)
     Toolkit released via SPIN-SHARE
     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.

   SPIN-SSLED Trial

    (Scleroderma Support group Leader
    EDucation)   Full-scale trial 
     172 enrolled   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)
      Cohort Study   TBD    
      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.

   SPIN-PACE Study

    (Physical ACtivity Enhancement)
     Cohort Study   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.

    
     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.