Archive pour June 2020
Biography
Dr. Marika Sarfati, MD, PhD, is Director of the Immunoregulation Laboratory at the CHUM Research Centre, and Full Professor, Department of Medicine, University of Montreal.
Laboratory staff
- Marwa Bast, PhD student
- Laurence Anne Chapuy, PhD student
- Heena Mehta, Research Associate
- Amélie Therrien, MSc student
- Shunya Mashiko, Research Assistant
- Manuel Rubio, Research Assistant
Themes
Chronic inflammatory skin diseases (psoriasis, atopic dermatitis, scleroderma).
Chronic inflammatory bowel diseases (Crohn’s disease, ulcerative colitis).
Allergic diseases.
Research topic
Characterization and function of innate immune cells and T lymphocytes in tissue of patients with chronic inflammatory diseases.
The SPIN Cohort
The SPIN Cohort is a group of people with scleroderma from around the world who participate in SPIN’s online studies. Cohort participants are recruited by rheumatologists and other scleroderma healthcare providers from over 40 clinical sites in 7 countries. Through the cohort, SPIN collects information about important challenges to people with scleroderma and their support needs. Some cohort participants are also invited to test SPIN’s online support programs for scleroderma before releasing them to the public.
Click here to learn more about the cohort: www.spinsclero.com/cohort
New SPIN Training Program for Scleroderma Support Group Leaders
For many people with scleroderma, support groups offer a safe and comfortable environment where people can exchange support and learn how others have dealt with scleroderma-related issues. The leaders of support groups play an especially important role, since they are in charge of the many tasks that go into running a successful meeting, from coordinating logistics to facilitating meaningful discussion.
However, running a support group is no easy task: many leaders feel overburdened by their role, and some even have to disband their groups due to this. Furthermore, support groups are not always available, depending on where you live.
To help support these leaders and encourage new leaders to form their own support groups, the Scleroderma Patient-centered Intervention Network (SPIN) has created the Scleroderma Support group Leader EDucation (SPIN-SSLED) Program. This training program, which is delivered by videoconference, provides leaders with information and resources to help them feel more comfortable, confident and supported in their roles, and in turn, contribute to a more positive support group experience. Ultimately, the goal is to make support groups more widely available to people with scleroderma in Québec, the rest of Canada, the USA, and internationally.
The SPIN-SSLED Program takes place over 13 weeks (roughly 3 months). Participants meet each week over online videoconference for 60-90 minute sessions led by a trained facilitator. Each week, participants are guided through a different module that tackles one aspect of leading a support group, such as structuring a group meeting, recruiting new members, fostering a positive group culture, supporting yourself as a leader, and many other topics. At the end of 13 weeks, participants are provided with a certificate attesting that they have successfully completed the program.
The SPIN-SSLED Program also offers a number of supplementary resources, including:
- A workbook that summarizes all modules.
- An online forum where participants can discuss what they’ve learned with other participants.
- Educational videos that illustrate challenging scenarios that support group leaders often encounter.
- An Online Resource Center with educational videos on various scleroderma topics and support group activity ideas.
SPIN researchers are conducting a clinical trial to evaluate the SPIN-SSLED Program. If shown to be effective, the SPIN-SSLED Program will allow support group leaders to be certified by Sclérodermie Québec, Scleroderma Canada or the Scleroderma Foundation in the US.
For more information, send an email to spinssled@gmail.com
Dr. Brett Thombs, Director of Spin
Tel.: 514-340-8222 ext. 5112
Dr. Thombs and his team focus on developing strategies to improve quality of life and reduce disability among people living with scleroderma. He is the Founder and Director of the Scleroderma Patient-centered Intervention Network (SPIN), a patient-researcher collaboration that maintains an ongoing cohort of > 2,000 patients from over 40 sites in 7 countries and conducts trials of patient-centered tools to support coping with scleroderma. Among his over 250 peer-reviewed publications, Dr. Thombs has authored > 80 on patient experiences and outcomes in scleroderma. He has been PI on over $3.5 million in funding for patient-oriented research in scleroderma.
The SPIN team consists of professionals with a wide variety of backgrounds, patient advocates, trainees, and support staff. For more information about these individuals, please click the following link: https://spinsclero.com/en/teams-committees
Columbia
