A large scale SPIN Cohort study led by SPIN Co-Director Linda Kwakkenbos was recently accepted for publication in Rheumatology. The study aimed to assess fatigue compared to general population data and identify associated sociodemographic, lifestyle and SSc disease factors. The team found that fatigue is common in scleroderma and scores were substantially higher than the general public and is associated with many lifestyle and disease factors. Read here for more information on this study.

Congratulations to the SPIN Team for publishing a secondary analysis from the SPIN-SSLED support group leader training trial. Some of SPIN’s patient organization partners wondered if experienced leaders benefit and should take the program, which continues to be offered by SPIN post-trial. We found that participants with experience benefit nicely. On the other hand, prospective leaders who are not yet leading a group did not benefit very much – likely because they did not have experiences to integrat into their leraning or a place to apply new skills and knowledge. The article is available at the Journal of Scleroderma and Related Disorders here.

SPIN studied Raynaud’s phenomenon severity ratings from 2,243 SPIN Cohort participants (20,233 ratings) and mapped the association of ambient temperature and symptom severity. The study was over 65 times larger than the largest previous study on the topic and provided new insights on how temperature may influence the experience of living with Raynaud’s phenomenon. For more information on this study, click here.

A cross-sectional study led by team member Dr. Claire Adams was recently accepted for publication in the Journal of Scleroderma and Related Disorders. The study investigated changes in work status and adequacy of financial resources among people with systemic sclerosis during COVID-19. The team found that work status and financial wellbeing did not change substantively among people with systemic sclerosis during the pandemic, however, flexible work policies may support people with systemic sclerosis to commence and continue to work. Read more here.

We are thrilled to announce that our SPIN Team has been awarded a Canadian Institutes for Health Research Project Grant (4 years; $685,000) for its ongoing work on patient engagement in scleroderma research. This grant will support a series of cohort-based randomized controlled trials to improve the communication of research results to people with scleroderma. The Team will launch the SPIN-CLEAR (Communicating Latest Evidence And Results) project in the next months!

We are excited to share that the COVID-19 LSR team was awarded a 2-year funding ($233,000) by CIHR for “Recovering from the COVID-19 Pandemic, Informing Future Public Health Crises, and Building Global Evidence Base for Mental Health Research: A Systematic Review of COVID-19 related Mental Health.” This grant will allow our team to integrate new evidence into our comparison prior to and during COVID-19, evaluate mental health symptom trajectories across the pandemic, and conduct a meta-research review of COVID-19 mental health research to identify strengths and weaknesses in planning for ongoing mental health surveillance and future disaster preparedness. 

A meta-analysis of primary studies employing the Geriatric Depression Scale (GDS-15) led by Marc Parsons and supported by DEPRESSD team members was published in Scientific Reports. Many studies use the GDS-15 to estimate depression prevalence. The team compared prevalence based on the GDS-15 to a gold-standard diagnostic test of depression. We found that the most used GDS-15 cutoff overestimated depression prevalence substantially and that the cutoff that most closely matched true prevalence provided estimates which were too heterogeneous to be useful in practice. For more information on this study, click here.

Dr. Brett Thombs (www.thombsresearchteam.ca/) of McGill University and the Scleroderma Patient-centered Intervention Network (SPIN; www.spinsclero.com), is looking

for a candidate to fill a full-time Research Coordinator position within our team at the Lady Davis Institute of the Jewish General Hospital in Montreal. To apply: Applicants should send (1) a cover letter explaining their interest in the position, (2) a curriculum vitae, (3) an unofficial transcript, and (4) an English writing sample and, if possible, an additional writing sample in French, to Marie-Eve Carrier at carrier.marie.eve@gmail.com. Applications will be reviewed until the position is filled. Read more about this position here.

SPIN has been awarded the CIHR Inclusive Research Prize for Patient Engagement! This award will support our ongoing efforts to advance patient engagement in health research.

Marie-Eve was recently named by the SPIN’s Steering Committee as a Co-Director of SPIN. For over 10 years, Marie-Eve has coordinated numerous SPIN projects and represented the SPIN team in the scleroderma community. Her new role will support her outreach with community partners and involve her in leadership decisions. 

Tiffany is currently leading a study to develop a tool, jointly with researchers, health care providers, and patients, to map sources of pain in SSc, determine patterns of pain from different sources, and understand pain management experiences. The team will then administer the final version of the tool to participants in the SPIN Cohort. To access the protocol for this study, click here. 

Tiffany led 2 cross-sectional SPIN Cohort studies which identified sociodemographic and disease-related factors associated with satisfaction with social roles and activities and physical function in SSc. Multiple factors were associated to both outcomes. The team found that physical function was impaired for many individuals with SSc, but this did not appear to translate to lower satisfaction with social roles and activities. For more information, click here (social functioning), and here (physical functioning). 

A cross-sectional SPIN Cohort study led by Marieke Neyer was recently published in the Journal of Psychosomatic Research. The study aimed to evaluate the association between resilience and patient-reported somatic (fatigue, pain, sleep) and mental health (anxiety, depression) outcomes in people with systemic sclerosis. The team found that, in general, people with lower resilience reported worse mental health and somatic symptoms, and greater disease severity, except for one group of people who reported high resilience and positive mental health, despite high disease severity, fatigue, pain and sleep disturbance. For more information on this study, click here.

A SPIN-COVID-19 Cohort study led by team member Elsa-Lynn Nassar, which was recently published in The Lancet Rheumatology, found that 80% of participants used telehealth at least some of the time during the pandemic and that, post-pandemic, over 50% have continued to use at least some telehealth for their scleroderma care. An exception was in France, where only 35% received telehealth care in the pandemic and 20% post-pandemic. Check out the full article here.

A meta-research review led by Claire Adams and with current and former SPIN team members  Elsa-Lynn Nassar, Julia Nordlund, Cassidy Dal Santo, Danielle Rice, and Vanessa Cook, was recently published in The Lancet Rheumatology. The review aimed to evaluate the proportion of studies published in high-impact rheumatology journals that (i) reported whether they engaged people with lived experience and (ii) actually engaged people with lived experience. The team found 9% of studies included in the review reported engaging people with lived experience, and 20% engaged people with lived experience but did not report this in their articles. It is estimated that, overall, 29% to 44% of included studies might have engaged people with lived experience, indicating engagement of people with lived experience in rheumatology research is low. For more information on this study please click here.

An individual-patient data meta-analysis led by Nadia González Domínguez was recently published in the Journal of Clinical Epidemiology. The study aimed to estimate the minimal detectable difference of the 15-item geriatric depression scale (GDS-15). The team found that this estimate was around 3.81 points for the highest confidence level used, and was influenced by the proportion of people with major depression in a given study. Read more here.

The Scleroderma Patient-centered Intervention Network (SPIN: www.spinsclero.com) is looking for a candidate to fill a full-time research assistant position within our team at the Lady Davis Institute of the Jewish General Hospital. The start date will be in August or September 2024. To apply: Applicants should send (1) a cover letter explaining their interest in the position and how this would support their career goals, (2) a curriculum vitae, (3) an unofficial transcript, and (4) an English writing sample and an additional writing sample in French, to Marie-Eve Carrier at carrier.marie.eve@gmail.com. Applications will be reviewed until the position is filled. French language capacity will be assessed during interview. Read here for more details.

A cross-sectional SPIN Cohort study led by Afra Alkan was recently accepted for publication in Arthritis Care & Research. The study aimed to assess minimal detectable changes (MDCs) of the Health Assessment Questionnaire-Disability Index, Patient Reported Outcomes Measurement Information System-29 Profile version 2.0 domains, and Patient Health Questionnaire-8 in Systemic Sclerosis, as well as compare MDC estimates by age, sex, and SSc subtype. The team found that MDC95 estimates were not materially different across subgroups. For more information on this study, click here.

We are excited to share that Sophie Hu has been awarded a Master’s scholarship from the Canadian Institutes of Health Research (CIHR). This award will help support her training with our team as she pursues her Master’s program in Epidemiology. Congratulations Sophie!

Angelina Dimopoulos and Chloë Ethier van Blokland recently joined the SPIN team as volunteers. Angelina is a third-year psychology student at McGill University. She is committed to pursuing graduate studies and making a positive impact in the field of psychology. Chloë completed her B.Sc. degree with a major in Psychology and minor in Gender, Sexuality, Feminism and Social Justice Studies at McGill this spring. She hopes to focus on issues related to women's health and social justice in her career. Read more about Angelina and Chloë. 

We are excited to share that Amina Tasleem, our research assistant for the DEPRESSD project, has been admitted to Harvard University’s MPH program in Health Management. Amina joined the team in 2020 as an undergraduate honors thesis student at McGill University and is currently working on the DEPRESSD and COVID-19 LSR project. She will join the program in the Fall of 2024. Congratulations, Amina! 

We are happy to share that Ying (Sheryl) Sun, who has been a Research Project Coordinator of our DEPRESSD and the COVID-19 LSR for the past 6 years, has been admitted to Johns Hopkins’ PhD program in Epidemiology for Fall 2024, in the Clinical Trials and Evidence Synthesis track. Congratulations, Sheryl! 

Dr. Yin Wu, Research Associate with the DEPRESSD, has been part of the team since 2018. She recently started a new position as a Research Professor at the Shanghai Jiao Tong University (SJTU), School of Public Health. SJTU is one of the top few universities in China, and their School of Public Health is also highly respected. Although Yin will no longer be part of the day-to-day work of the team, she will remain a member of the DEPRESSD Steering Committee, continue to play a key role in the DEPRESSD Project and collaborate as an independent professor. Congrats Yin!

We’re happy to share that Diana Jiang has been admitted to McGill’s MA program in Educational Psychology (Human Development). Diana joined the DEPRESSD team as a research assistant in November 2020 and has worked on several COVID-19 LSR projects. She’ll start her program in September 2024. Congratulations Diana!

We are excited to share that Monica D’Onofrio (SPIN research assistant) has been awarded a Master’s scholarship from the Canadian Institutes of Health Research (CIHR). This award will help support her training with our team as she will begin her Master’s program in Epidemiology in the Fall of 2024. Congratulations Monica!

We are excited to share that Tiffany Dal Santo has been admitted to Concordia’s MA program in Psychology (Research and Clinical Training Option). Tiffany joined the DEPRESSD team in 2020 as undergraduate honours thesis student and is currently working with the SPIN team as a master’s student in psychiatry. She will begin the program in September 2024. Congratulations, Tiffany!

We are happy to share that Yutong Wang, who is a key member of our COVID-19 LSR project, has recently been admitted to McGill's PhD program in Epidemiology. Starting from September 2024, Yutong will continue to be a part of the team for the next several years, working with the DEPRESSD Team on individual participant data meta-analyses and also with the SPIN Team on primary data work. Congratulations, Yutong!

SPIN was awarded $25,000 from Skin Canada to form a team of people with scleroderma and researchers from Canada, the United States, and France to form a team to develop research on itch in scleroderma. Itch is a critical but understudied problem in scleroderma. Thanks to Tiffany Dal Santo for her work in putting together the successful grant proposal!

Dr. Thombs was quoted in a Washington Post article on menopause and depression. Similar to our team’s work, the article scrutinizes evidence and concludes that the menopause depression link is not likely much greater than for other health conditions that people experience. Read the full article here.

Congratulations to Brett who received the Alex Leighton Award from the Canadian Association of Psychiatric Epidemiology (CAPE) and the Canadian Psychiatry Association (CPA) for his work in mental health epidemiology: https://www.cpa-apc.org/awards/annual-collaborative-awards/. He will be presented with the award at November’s CPA/CAPE meeting.

Monica has been admitted to McGill’s MSc program in Epidemiology and will continue to work with the SPIN team. Monica will start her program in September 2024. Congratulations, Monica!

Elsa received a travel award from FRQS-UNITÉ to present her work at the Scleroderma World Congress in Prague. Congratulations Elsa!