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!

Meira Golberg joined the SPIN and DEPRESSD teams as a full-time Biostatistician in January 2024. She obtained her Bachelor of Science in Mathematics and Biology at McGill University and Master of Mathematics in Biostatistics at the University of Waterloo. Meira has worked on a wide range of projects focused on measuring predictors of cognition, physical and mental well-being, mental health and unmet healthcare needs. She will be supporting the SPIN and DEPRESSD teams in their methodologic aims and associated data analyses. Read more about Meira here.

Cassidy Dal Santo joined the SPIN team as a master's student in September. She completed her B.Sc degree in the Honours Psychology at McGill in 2023. Her research will primarily involve examining coping mechanisms in individuals with scleroderma. Read more about Cassidy here.

Dr. Jieting (Jenny) Zhang joined the DEPRESSD team as a visiting professor in October. She is an associate professor in School of Psychology, Shenzhen University, China. Her research interests include the influence of childhood adversity on mental health and  mindfulness-based interventions. Read more about Jenny here.

Dr. Yin Wu and the team reviewed data contribution to the four depression screening tool accuracy individual participant data meta-analyses (IPDMAs). We found that 65% of 456 eligible studies contributed data overall; data contribution was associated with multiple characteristics of primary studies. Over 80% of 161 non-contributions were because authors were unreachable or data were unavailable. This was the largest study to investigate data contribution to IPDMAs that has examined characteristics of eligible studies and the first in the field of diagnostic test accuracy, which may support future research to promote data contribution to IPDMAs. Read more about the publication here: link.

We are excited to share that Claire Adams (SPIN postdoctoral fellow) has been awarded a prestigious Banting Fellowship for her project “Patient Engagement in Health Research: Enhancing Knowledge and Practice”. In addition, she was recently awarded a CIHR Postdoctoral Fellowship. Claire will work to improve patient engagement in SPIN and in applied health research more broadly. The fellowships were awarded based on her research excellence and leadership, the quality of the proposed project, and research environment. Congratulations Claire!

Drs Thombs and Rice, along with colleagues Dr. Sarah Markham and Dr. Roy Ziegelstein, were commissioned by the BMJ to discuss new screening recommendations from the United States Preventive Services Task Force. See the editorial here: LINK.

Team members Dr. Yin Wu (moderator), Letong Li, Kexin Li and Diana Jiang (co-presenters) recently presented their symposium titled “Mental Health Intervention Effects in the General Population and Among Youth and Older Adults to Inform Management Strategies During and Post-COVID-19: Evidence from an Ongoing Living Systematic Review” at the 2023 CPA convention in Toronto. Kexin also presented her poster on loneliness among older adults during COVID-19. Congratulations to the team!

A cross-sectional study led by team member Sabrina Provencher was recently published in the Journal of Scleroderma and Related Disorders. The study aimed to determine if informational and support needs of recently diagnosed individuals with systemic sclerosis differ from people diagnosed for longer periods of time. The team found that people with systemic sclerosis have a wide range of information and support needs, regardless of their disease duration, but people with recent diagnoses have greater needs. For more information about the study, please click here!

Elsa-Lynn Nassar recently won the Me2 Majumdar Award for Best Poster at the Knowledge Translation Summer Institute 2023, jointly organized by KT Canada and the University of Ottawa's School of Epidemiology and Public Health! Her poster presented an overview of SPIN's living systematic review of knowledge translation tools for disseminating research results to patients.

Dr. Thombs and the SPIN team were featured in an article published in The Montrealer. The article discussed SPIN team’s research, highlighting the SPIN-HAND program that helped to improve the hand function for Scleroderma patients. Read more here.

A cross-sectional meta-research study led by Tiffany Dal Santo was recently published in the Journal of Clinical Epidemiology. The study aimed to assess how well methods and results of meta-research studies on reporting guideline adherence were themselves reported. The team found that only a small proportion of included studies provided a fully replicable explanation of how they coded the adherence ratings and completely reported individual study results. For more information on this study, click here!

Team member Sabrina Provencher was admitted to the Université de Montréal’s Doctor of Medicine program beginning in the fall of 2023. Sabrina completed her second undergraduate honours thesis under the supervision of Dr. Brett Thombs looking at factors associated with anxiety in people with systemic sclerosis. Her Master’s of Psychiatry thesis focuses on the reduction of a scale that measures self-efficacy in support group leaders. Congrats Sabrina! 

We are excited to share that Maria Gagarine has been admitted to the University of Toronto's Doctor of Medicine program beginning in the fall of 2023. Maria joined SPIN in 2020 during her Master's degree in Public Health at McGill, leading the oral health research project. She hopes to continue working in the scleroderma field as a tribute to her mom who had scleroderma. Congratulations, Maria!

Monica D’Onofrio joined the DEPRESSD team in April as a summer Research Assistant. She completed her BSc in Physiology at McGill in December, where she worked in cancer research. She’s interested in mental health and aims to pursue a degree in clinical psychology. Read more about Monica here.

Brooke Levis, Research Associate with the DEPRESSD and SPIN teams, has been part of the Thombs Research Team since 2009. She recently started a new position as the Director of Epidemiology at Epividian, a healthcare analytics and software company that does pharmacoepidemiological research to improve the lives of people with HIV. Although she will no longer be part of the day-to-day work of the team, she will remain a member of the DEPRESSD Steering Committee. Congrats Brooke!

A cross-sectional study led by team member Marieke Neyer was recently published in Arthritis Care and Research. The study aimed to examine the validity, reliability, and differential item functioning of the English and French versions of the 10-Item Connor-Davidson Resilience Scale (CD-RISC-10) in people with Systemic Sclerosis (SSc). The team found that the CD-RISC-10 is a valid and reliable measure of resilience in SSc, with comparable scores across both language versions. Importantly, this study is the first to validate a resilience scale in SSc, and its findings demonstrate that the CD-RISC-10 can be used to evaluate resilience in people with SSc, including in international studies involving English- and French-speaking participants. For more information about the study, please click here!

Four team members have been awarded scholarships from Fonds de Recherche du Québec – Santé. Tiffany Dal Santo and Sabrina Provencher received Master’s Training Scholarships, while Elsa -Lynn Nassar and Marc Parsons received Doctoral Training Scholarships. All highly ranked on their panels. The funds will allow them to continue working on their projects with our team.

Dr. Afra Alkan has joined the DEPRESSD team as a postdoctoral fellow in April. She completed her PhD in Biostatistics at Ankara University in 2022 in Ankara, Türkiye. Her research interests include evaluation of diagnostic accuracy measures, multivariate analysis, longitudinal data analysis, and R programming. Learn more about Afra here.

The first report of the SPIN team’s living systematic review of the (1) prevalence of mood and anxiety disorders in scleroderma and (2) factors associated with mood and anxiety symptoms, led by team member Elsa-Lynn Nassar, was recently published in Scientific Reports! The team found that the prevalence of mood and anxiety disorders appears to be high in scleroderma, but estimates vary widely. None of the reviewed studies on factors associated with mood and anxiety symptoms included large enough samples to draw strong conclusions. The team will continue to update results as they become available, and ongoing dissemination of results will be facilitated via posting to the project website. To read the full article, click here! 

A correspondence on patient-researcher co-presentation of research results, led by team member Vanessa Cook, and co-authored by patient partner Amy Gietzen, team member Elsa-Lynn Nassar, SPIN collaborator Dr. Amanda Wurz, and Dr. Brett Thombs, has recently been published in The Lancet Rheumatology, the world's top rheumatology journal. The piece comments on SPIN's piloted method of co-presenting at The 2021 National Scleroderma Conference and highlights how collaborating with patients may improve the dissemination of research results to patients living with scleroderma and ensure that research is meaningful to those it affects.  Click here to read the full correspondence.

We are excited to share that team member Elsa-Lynn Nassar has been admitted to McGill’s PhD program in Clinical Psychology and will continue with the team for the next several years! Elsa will begin the program in September 2023, and her research will focus on improving knowledge translation and patient engagement in health (including mental health) research. Congratulations, Elsa!

Dr. Sarah Markham, a patient partner on our team, recently published an opinion piece in BMJ in response to our team’s latest publication titled “Comparison of mental health symptoms before and during the covid-19 pandemic: evidence from a systematic review and meta-analysis of 134 cohorts.” The article emphasized the importance of high-quality research in the field of mental health. Read the full article here.

A living systematic review on COVID-19 mental health changes, led by Sheryl and co-authored by other LSR members, has been published in the BMJ. This review evaluated longitudinal studies that compared mental health outcomes prior to the pandemic and during COVID-19. The team analyzed data from 134 cohorts of people from 31 countries. They found that there are no or minimal changes in mental health among the general population and 11 subgroups (e.g., age groups, sex or gender, pre-existing medical or mental health conditions). One exception is among women for whom there were consistent negative small changes across outcome domains. The results suggest that mental health in COVID-19 is more nuanced than previously assumed and that this is largely a story of resilience. To read the paper in BMJ [LINK] and view the infographic [LINK], click on the provided links

Dr. Wu and the team compared the accuracy of the 7-item Hospital Anxiety and Depression Scale Depression subscale (HADS-D) with the 14-item full scale (HADS-T) to screen for depression. In this study, 20,700 participants (2,285 major depression cases) from 98 studies were included. We found that sensitivity and specificity of the HADS-T were not superior to the HADS-D for detecting major depression. Thus, using the full 14-item HADS-T for depression screening would require additional time and patient burden without improving accuracy. Read more about the publication here: https://pubmed.ncbi.nlm.nih.gov/36689386/.

The SPIN team has been awarded a 1-year $20,000 Planning and Dissemination Grant-Institute Community Support for its project titled “Towards Understanding Pain Sources, Patterns, and Barriers to Effective Management in Systemic Sclerosis: A Patient-Researcher Partnership Musculoskeletal Health and Arthritis.” Thanks to team member Elsa-Lynn Nassar for her leadership on the proposal. This project will involve SPIN researchers and patient partners to jointly develop a tool to assess sources of pain in systemic sclerosis (SSc), pain management services, and barriers to improving pain management. Congrats to the SPIN team!