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Support Group Leader Training Program For Rare DiseasePosted by: Postdoc positions by NIH
Posted date: 2018-Dec-12
Dr. Brett Thombs (www.thombsresearchteam.ca/) of McGill University and the Scleroderma Patient-centered Intervention Network (SPIN; www.spinsclero.com), in partnership with Scleroderma Canada (www.scleroderma.ca), is seeking a postdoctoral fellow to coordinate the Scleroderma Support group Leader EDucation (SPIN-SSLED) Program. This is a two-year position supported by the Mitacs fellowship program (www.mitacs.ca/en).
People with rare diseases face the same challenges as people with more common diseases, as well as additional unique challenges, but typically cannot access disease-specific professional support services. Peer-led support groups often fill this gap. Scleroderma, is a rare autoimmune connective tissue disease that causes significant disability and disfigurement. There are over 200 peer-led scleroderma support groups affiliated with the patient organization Scleroderma Canada and SPIN’s patient organization partners in the USA, UK, and Australia. Many patients, however, cannot access support groups. In other cases, support groups are not sustained due to factors that include demands on group leaders living with a burdensome disease and limited organizational and group management skills of group leaders.
The SPIN-SSLED Program is an innovative 13-week training and educational program for scleroderma support group leaders that is delivered to support group leaders internationally via videoconference. The objectives of the SPIN-SSLED Program are to improve support group leader efficacy and, thus, to increase the effectiveness and sustainability of existing scleroderma support groups, reduce burden on support group leaders, and increase the availability of scleroderma support groups. SPIN recently completed a successful feasibility trial (https://clinicaltrials.gov/ct2/show/NCT03508661?term=brett+thombs&rank=2) with positive results, including a high level of satisfaction with the program, substantially increased leader self-efficacy, and substantially reduced leader burden.
The fellow will gain training in research designed in partnership with patients and patient organizations, which will directly impact support and quality of life outcomes for people with a devastating rare disease. The fellow will be responsible for coordinating a randomized controlled trial that will be conducted collaboratively between SPIN and Scleroderma Canada, to test the effectiveness of the SPIN-SSLED Program. The postdoctoral fellow will gain experience in the training and education of patient support group leaders, partnering with patient organizations from Canada, the USA, the UK, and Australia, the management of a large international trial, data analysis, manuscript development (including first-authored publications), dissemination of results via national and international conferences, grant writing, and the supervision of students and staff.
SPIN is an international collaboration of over 150 members, including patients, patient organizations, researchers, and health care providers from 7 countries (Canada, USA, UK, France, Spain, Australia, Mexico) that is directed by Dr. Thombs. SPIN actively partners with > 20 Canadian and international patient organizations and maintains a cohort of > 1,800 patients from > 40 recruiting sites. The postdoctoral fellow will interact with SPIN’s international multidisciplinary team, which includes psychologists, rheumatologists, methodologists, and patient research partners from around the world. Dr. Thombs is affiliated with the McGill’s Departments of Psychiatry, Psychology, and Epidemiology, and the fellow will have the opportunity to participate in training activities, including seminars, in these departments and at the Jewish General Hospital. In addition to leading SPIN, Dr. Thombs is known for his expertise in research methodology, including trials, and he is leading an international team that is developing guidelines for reporting novel trials conducted in cohorts and using other routinely conducted data (www.researchintegrityjournal.biomedcentral.com/articles/10.1186/s41073-018-0053-3). In the last 5 years, trainees under Dr. Thombs’ supervision have first-authored 56 peer-reviewed articles (plus 7 submitted for review) and have co-authored articles more than 120 times. The fellow will spend 25% of the fellowship onsite at Scleroderma Canada headquarters (Hamilton, Ontario) in order to gain hands-on experience working with a dynamic organization that partners with researchers to develop and disseminate tools, including the SPIN-SSLED Program, to support patients.
Work time throughout the year will be divided between the McGill University and the Jewish General Hospital in Montréal, Québec (75%), and Scleroderma Canada in Hamilton, Ontario (25%). Applications from candidates for distance/remote fellowships may also be considered in certain circumstances. The fellow will be responsible for housing.Qualifications:
Applicants should have a recent doctoral degree in a health-related field, such as health psychology, public health, or epidemiology, for example. The doctoral degree should be obtained by the date of hire.To Apply:
Applicants should send (1) a cover letter explaining their interest in the fellowship and how working in this position would support their career goals, (2) a curriculum vitae, (3) an unofficial transcript, (4) reprints or preprints of published articles, and (5) contact information for three references to Ms. Claire Fedoruk (claire.fedorukgmail.com) by January 7, 2019. Only candidates who are selected for an interview will be contacted.