Newslet ter Spring & Summer 2013

Latest News… As we are entering our 10th year of existence, the Canadian Scleroderma Research Group is still busy assessing Canadian Scleroderma Registry patients annually, entering their data in a secure online database powered by Datazoom Solutions Inc., recruiting newly diagnosed Scleroderma patients (≤ 5 years since their first non-Raynaud's symptoms) and of course, working on many interesting projects.

One of these projects is the McGill Systemic Auto-immune Rheumatic Diseases Harmonized Data Exchange Platform -- or the McGil l SARD DEP for short. This platform will allow researchers from 4 different cohorts based at McGill University in Montreal to compare 4 auto-immune diseases: Systemic Lupus Erythematosus, Early Rheumatoid Arthritis, Inflammatory Myositis, and Systemic Sclerosis. We hope that looking at these diseases simultaneously will not only help to identify differences but also commonalities. We are confident that this collaborative work with other research groups will help to advance our knowledge about Scleroderma. With the help of another Group called CANCoRC, we also hope to broaden this initiative to include other rheumatologic cohorts in Canada, such as Osteoporosis, Spondylo-arthritis, Vasculitis, and Ankylosing Spondylitis.

Stay tuned to find out more about these ongoing initiatives.

More Inside… Page 2 Mark your calendar

Scleroderma Society of Canada • 2013 Congress Hamilton, ON • Sept. 27-28

Page 3 The End of a 6-year Strategic Training Init iat ive in Health Research Grant: Our Main Achievements

Page 4 Quality of Life in SSc The Use of Capil laroscopy in SSc

Visit our website for more information http://www.canadian-scleroderma-research-group.ca

Page 5 Ongoing CSRG Projects New Upcoming Biobank Management System

Page 6 Upcoming Scientif ic Meetings CSRG Contact Information

CSRG Newsletter Spring & Summer 2013

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2013 Scleroderma Congress

2013 Scleroderma Congress Hamilton, Ontario • Sept. 27 & 28, 2013

caring for the w h o l e p a t i e n t vers une approche holistique du patient

The 2013 Scleroderma Society of Canada Congress: “caring for the whole patient • vers une approche hol ist ique du patient” is the premier “meeting place” for patients, families, researchers, health system planners and clinicians with a shared interest in advancing knowledge of Scleroderma, its diagnosis and treatment; and improving the quality of life for persons living with scleroderma. The Congress showcases research, initiatives, tools and other resources, and aims to be a forum to network by providing practical and actionable tools, guidelines, and best practices.

This year’s Congress will provide participants with the opportunity to learn, share and build their knowledge of and experience with scleroderma through thought-provoking plenary sessions, informative and interactive concurrent sessions and poster presentations.

Simultaneous interpretation will be provided for plenary sessions. Concurrent sessions will be presented in English.

Program at a glance

Location

Sept. 26

Sept. 27 - 28

Art Gallery of Hamilton • Hamilton, Ontario, CANADA

CIHR – Café Scientifique “The face of rare disorders in Canada” (Free evening event open to all)

Day 1 & 2 • “Whole-patient care - Treating the patient not the disease”: Two days of plenary and concurrent sessions, and poster presentations (Registration required)

More information is available at www.sclerodermacongress.ca

Location Sheraton Hotel • Hamilton, Ontario, CANADA

Scleroderma Society of Canada

SCLERODERMACONGRE S S 2013

car ing for the whole pat ient

S E P T E M B E R 2 7 & 2 8H a m i l t o n , O n t a r i o

Société Canadienne de Sclérodermie

vers une approche hol i s t ique du pat ient

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CSRG Newsletter Spring & Summer 2013

The End of a 6-year CIHR Strategic Training Init iative in Health Research Grant:

Our Main Achievements In 2007, the CSRG received a 6-year Canadian Institutes of Health Research (CIHR) grant aimed at allowing trainees to perform inte-grated, trans-disciplinary laboratory and clinical research using CSRG's online database, biologic materials such as serum and skin biopsies collected from hundreds of adult patients. The data were compiled and correlated with clinical data from the database in order to draw conclusions and, in the long run, suggest methods of targeted therapy in SSc.

Students • Twenty-two (22) Trainees and 47 summer students from different disciplines worked together, along-side dedicated and extremely knowledgeable CSRG mentors to explore the relationship between research findings in this

heterogeneous population and the clinical phenotypes as revealed by the database information.

To achieve their goals, the CSRG funded all these students partially or entirely, allowing them to work from 3 months to several years with mentors in different aspects of SSc.

Areas of research • In the cl inical areas, Trainees mainly trained with Dr. Janet Pope, a well-

established SSc investigator, and with Dr. Marie Hudson, a rheumatologist and epidemiologist, and one of the key Founders of our Group. Trainees interested in the psychosocial aspects of SSc trained with Dr. Brett Thombs in order to develop interventions to help patients and families cope with the disease. Laboratory training was mainly offered by Dr. Andrew Leask, an established SSc researcher, Dr. Mark Trifiro, Dr. Marc Servant, and Dr. Anie Philip in how SSc cells (fibroblasts) contribute to the fibrotic phenotype of SSc. Research expertise in col lagen and proteoglycan turnover was provided by Drs. Mort and Roughley. Dr. Mervyn Gornitsky provided mentorship on issues related to oral health. Finally,

training in statist ics was provided by Dr. Russell Steele, who has worked on multiple projects for the CSRG.

Throughout the years, the CSRG strongly encouraged interactions amongst the students. Thanks to six successful Scientific Meetings (2007-2012), numerous WEB courses, annual WEB seminars, and many specialized face-to-face meetings, all our students have had the opportunity to share their

ideas with others and learn about each others' projects.

Dissemination • The ultimate goal of this grant was not only to encourage interdisciplinary collabo-ration but also to disseminate our findings to the community at large by establishing knowledge trans-lation activities. Thanks to a one-of-a-kind partnership with Scleroder-ma Society of Canada (SSC), we were (and still are) privileged to do exactly that. SSC has been a key partner since CSRG's inception in late 2003, offering not only much

needed financial support but also invaluable opinions and feedback. SSC was directly involved in a significant number of CSRG projects.

This amazing complementary col-laboration between clinicians, re-searchers and "end-users" has allowed our Group to increase our

A one-of-a-kind partnership with Scleroderma Society of Canada

Continues on page 4 …

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For years now, capillaroscopy has been considered to be the most reliable way to distinguish between primary and secondary Raynaud's phenomenon through identification of an early SSc-pattern. In addition, preliminary studies show that the use of capillaroscopy might also help to predict future complications, such as

lung involvement and digital ulcers in SSc.

Considering that the new ACR/EULAR criteria for the classification of SSc now also includes capillaroscopy, we hope that, with the use of this device, we will be able to diagnose scleroderma in the early phase of the disease, allowing for early treatment, with the objective of pre-venting irreversible organ damage.

readily available to the McGill SARDS Group via an online plat-form: The McGill SARDs Harmoni-zed Data Exchange Platform (DEP) powered by Datazoom Solutions. This was achieved in May of this year. The first project of the McGill Harmonized DEP project spear-headed by Dr. Hudson will aim at comparing variables associated with quality of l i fe in the 4 cohorts. Another goal of the CFI grant will be to develop a biobanking mana-gement system that will allow the 4 cohorts to better catalogue their bio-specimens and better track them using an onl ine system. To do this, Datazoom Solutions will adapt a tool used by the National Cancer Institute (NCI) in the USA called CaTissue . CaTissue has been used by the NCI for many years in order to advance cancer research by improving access to research data from tumor samples and images.

C o m p a r i n g p a t i e n t s q u a l i t y o f l i f e i n

f o u r M c G i l l U n i v e r s i t y S y s t e m i c

A u t o - i m m u n e R h e u m a t i c D i s e a s e s

understanding the disease in order to better treat its symptoms, and the people affected by the disease.

Publications • The Group has published over 80 papers in peer-reviewed journals and has presen-ted posters at several provincial, national and international scientific meetings.

What's next? • We are confident to say that all this hard work has contributed to build the knowledge and increase the capacity for SSc research in Canada. However, with the end in 2013 of both our 5-year CIHR Team grant and our 6-year CIHR Training grant, we face major financial challenges. We are cons-tantly searching for new funding opportunities that would allow us to continue to keep our online registry of patients alive and pursue our research activities, both national and international, for many years to come. Sadly, funding has become scarce and more and more difficult to obtain from both government and pharmaceutical sources, and conse-quently, donations are for the time being our only hope to continue our activities.

We encourage you to please visit our new CSRG website to find out more about our publications, as well as many of our research projects and activities.

Our achievements • Continues from page 3 …

The CSRG is now able to look at nailfold capillaries in Systemic Sclerosis patients with targeted precision by using a capillaroscopy device. With this tool, which has a lens that magnifies images 200 times and is attached to a portable computer, Dr. Geneviève Gyger and Dr. Ariel Masetto, both CSRG rheumatologists, are capable of better assessing the morphology and density of the nailfold capillaries (the small red spots seen on this image).

The Use of Capil laroscopy in SSc

Dr. Marie Hudson

The McGil l Systemic Auto-immune Rheumatic Diseases (McGill SARDs) Group was made possible thanks to a Canada Foun-dation for Innovation (CFI) grant. Under the direction of Dr. Murray Baron and in collaboration with Dr. Sasha Bernatsky, Dr. Angela Genge, Dr. Marie Hudson and Dr. Vivian Bykerk, this initiative will allow the CSRG to more easily compare our Scleroderma registry patients to Canadian patients with other rheumatologic diseases such a Lupus, Early Rheumatoid Arthri-tis, and Inflammatory Myositis, in order to not only identify differen-ces but also commonalities between these four auto-immune rheumatic diseases. The f irst goal of the CFI grant was to harmonize (i.e. transform or recode) selected variables in the 4 cohorts, allowing for better compa-risons. This was successfully done in the last 1.5 year on over 75 variables. The second goal was to make this harmonized data file

Page 5

A Canada Foundation for Inno-vation (CFI) grant will soon allow the CSRG to modernize their biobank management system with the help of Datazoom Solutions Inc. In the long run, this newer system should help save time and lower the risk of errors. Right now, the labels used to identify our bio-specimens are hand-written by the nurses and laboratory technicians working with the CSRG, and we use EXCEL to catalogue and track our serum and skin bio-specimen samples. The plan now is to adapt a National Institutes of Health (NIH) biobank management tool called

CaTISSUE in order to better identify and track our samples using barcodes along with an online system linked to our registry

database. This NIH tool adapted to meet our specific needs should make the whole specimen collection proce-dure easier for everyone. It should provide researchers working with the CSRG a quick and easy way to the specimens they require.

We hope to start implementing this new system at the CSRG labs and at selected recruiting sites by the end of 2013.

Is the Use of ACE Inhibitors Prior to the Onset of Scleroderma Renal (Dr. Marie Hudson, Dr. Murray Baron, Dr. Sharon Nessim, Dr. Yael Luck, Dr. Sindhu Johnson, Solène Tatibouet)

Crisis Associated with Worse Outcome? (Dr. Maggie Larché, Dr. Nader Khalidi, Anne Hu)

Development of CD109 as a Novel TGF-beta Antagonist and Anti-Fibrotic Agent for the Treatment of Scleroderma (Dr. Anie Philip)

Assessing the differential item functioning of the Body Image Avoidance Questionnaire for systemic sclerosis (BIAQ-Scleroderma): Can scores from English and French versions be combined? (Dr. Thombs, Lisa Jewett)

Can scores from English, French and Dutch versions of the Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT) be pooled? An assessment of differential item functioning in patients with systemic sclerosis (Dr. Linda Kwakkenbos, Dr. Brett Thombs)

Measurement equivalence of the Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT) in cancer patients compared to systemic sclerosis patients (Dr. Brett Thombs, Vanessa Delisle)

Are scores on English and French versions of the Center for Epidemiologic Studies (CES-D) scale comparable? An assessment of differential item functioning in patients with systemic sclerosis (Dr. Brett Thombs, Vanessa Delisle)

The development of a core set of measures for one-year trials in early diffuse systemic sclerosis (Dr. Dinesh Khanna, Dr. Murray Baron)

THANK YOU!

Many thanks to those who have dedicated and are still dedicating time, energy and expertise to help with CSRG projects. These will certainly contribute to better understanding scleroderma and better treating people suffering from it.

Ongoing CSRG Projects Here are some of the projects that we will be focusing on in 2013:

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N E W B I O B A N K M A N A G E M E N T S Y S T E M F O R T H E C S R G

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CSRG Director: Dr. Murray Baron mbaron@rhu.jgh.mcgill.ca National Study Coordinator: Suzanne S. Tai l lefer, PhD suzanne.taillefer1@mail.mcgill.ca Managerial support: Joanne D’Aoust jdaoust@jgh.mcgill.ca Active Recruit ing

Rheumatologists: Dr. Murray Baron, Montréal Dr. Peter Docherty, Moncton Dr. Paul Fortin, Québec Dr. Tamara Grodzicky, Montréal Dr. Marie Hudson, Montréal Dr. Niall Jones, Edmonton Dr. Elzbieta Kaminska, Calgary

C S R G 3755, Cote Ste-Catherine Road

Room A725 Montréal, Québec

H3T 1E2 CANADA

EULAR 2013 Date: June 12-15th 2013

Location: Madrid, Spain

For more information:

www.eular.org

We would love to hear from you!

If you have any questions or comments about the content of this newsletter, or would like to contribute to our next issue, please do not hesitate to contact Joanne D’Aoust via email: jdaoust@jgh.mcgill.ca

Dr. Nader Khalidi, Hamilton Dr. Maggie Larché, Hamilton Dr. Ariel Masetto, Sherbrooke Dr. Janet Pope, London Dr. David Robinson, Winnipeg Dr. Evelyn Sutton, Halifax Dr. Carter Thorne, Newmarket Col laborators: Dr. Sasha Bernatsky, Rheumatologist &

Epidemiologist Dr. Marvin Fritzler, ADL, Calgary Dr. Mervyn Gornitsky, DDS Mr. Phil Hughes, Patient Representative Dr. Mohit Kapoor, PhD Dr. Kevin Keen, Statistician Dr. Dinesh Khanna, Rheumatologist, UCLA Dr. Andrew Leask, PhD Dr. John S. Mort, Chemist Dr. Warren Nielson, Psychologist Dr. Anie Philip, Endocrinologist Dr. Anneliese Recklies, PhD M. Normand Ricard, Scleroderma

Society of Canada & Sclérodermie Québec

Dr. Peter Roughley, PhD

Ms. Maureen Sauvé, Scleroderma Society of Canada & Scleroderma Society of Ontario

Dr. Marc Servant, Pharmacologist Dr. Russell Steele, Statistician Dr. Brett Thombs, Psychologist Dr. Mark Trifiro, Endocrinologist

Thank you to Maura Buchignani, RN, for

editing this newsletter.

Don’t hesitate to contact Suzanne S. Taillefer if you have any questions about the CSRG, its

activities, or this newsletter: suzanne.taillefer1@mail.mcgill.ca

Please visit our website:

Canadian-Scleroderma-Research-Group.ca

ACR 2013 Date: October 26-30th, 2013

Location: San Diego, CA

For more information:

www.acrannualmeeting.org

Visit CSRG's Website http://www.Canadian-

Scleroderma-Research-Group.ca

U p c o m i n g S c i e n t i f i c M e e t i n g s