CSRG Winter 2013 Newsletter

CSRG’s Newsletter Winter 2013

ASM 2012 - Vancouver SSC & CSRG’s 6th Joined Meeting

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The 6th Annual Scientific Meeting (ASM) of the CSRG took place on September 28th and 29th, Hilton Metrotown Vancouver, BC, in conjunction with the annual meeting of the Scleroderma Society of Canada (SSC) and the ASM of the Canadian Network for Improved Outcomes in Systemic Lupus Erythematosus (CANIOS).

These meetings were attended by investigators, researchers, nurses, trainees, and consumers. The atten-dees had the opportunity to meet and discuss ongoing research in the field of Scleroderma and Lupus.

There was a Welcome Dinner for all CSRG and selected SSC members on Friday night followed by a Dessert reception. While enjoying delectable cakes, cookies, and pies, attendees perused CSRG's Students posters sum-marizing ongoing research projects. Interactions were quite lively and very informative.

On Saturday, the CSRG held its annual scientific meeting, where trainees presented to members their projects in greater detail. Two breakout sessions took place after lunch. Investigators, researchers and trainees discussed new research in basic and clinical science. A CSRG coordinators meeting was held while the breakout sessions were underway. Workshops for SSC members and consumers were held during this time. Many workshops were given by CSRG members.

At the end of the two-day conference, the CSRG and selected SSC members met together for a final dinner on Saturday night.

This year’s ASM was a meaningful and

WINTER 2013

Ø INSYNC

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Ø Our 2011-2012 Trainees and 2012 Summer Students

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More inside...

Ms. Fox (Scleroderma Society of BC) & Dr. Gornitsky (Dentist, CSRG)

Ø Ongoing projects

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Ø Our new website and more…

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Our last meeting…

The CIHR research grant that financially supported these scientific meetings since 2007 is ending March 31st of this year. Sadly, this 6th meeting was therefore our last one. These joined meetings have given clinicians, researchers, and

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patients so much throughout the years that it would be a shame to end here. We therefore still hope to join SSC whenever they meet annually and we will apply for funds in order to achieve this goal.

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rewarding experience for everyone involved.

We would like to thank the Scleroderma Society of Canada (SSC) and the Scleroderma Association of BC for welcoming us to Vancouver and helping us with this event.

A special thank you to the Scleroderma Association of British Columbia for hosting this meeting and to Bob Buzza, Robyn Fox, Joan Kelly, and their team of amazingly dedicated volunteers for their precious help in Vancouver, prior and during this successful meeting!!

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In November 2012, the CSRG joined forces with other scleroderma cohorts around the world to create the International Systemic Sclero-sis Inception Cohort or INSYNC.

A first meeting

During a 2-day meeting that took place at the Jewish General Hospital in Montréal, selected members of the CSRG (Drs. Baron, Hudson & Pope) sat down with other Directors of scleroderma databases from the United States (Dr. Frech), Spain (Dr. Carreira), Germany (Dr. Hunzelmann) and Australia (Drs. Proudman, Stevens, & Nikpour) to discuss ways to increase their ability to perform research. Ms. Maureen Sauvé, President of the Scleroderma Society of Ontario and Presi-dent of the Scleroderma Society of Canada, also attended this first INSYNC meeting.

Significance and outcome of this new collaboration

We believe that this col-laborative work will result in the formation of the world’s first large inception cohort of subjects with systemic sclero-sis (SSc). Although separately, these research groups have

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published extensively about many aspects of SSc, these studies have been based on prevalent cohorts with subjects of many different disease dura-tions.

Studies on topics such as mortality in SCc have been hampered relatively by small "N" size or have utilized the administrative data.

This large multi-national, multi-ethnic cohort will be able to pro-vide much more accurate data than previous studies. Accura-tely determining the predictors of mortality will allow us to direct future therapeutic trials at those with the highest risk.

In addition, studies that will come from the data and biologic speci-mens from this inception cohort will be unique. It has been very difficult for any one research group to acquire large numbers of bio-samples from recent onset disease. This new cohort will be able to provide those samples and will permit many studies of bio-markers and of pathophysio-logic mechanisms of the disease near its onset, which has not been possible before.

This cohort will also allow us to study the natural history of the disease in greater detail than has ever been performed. It will allow us to determine clinical and labo-ratory markers of significant

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disease progression so that treatment studies can be initiated in those at most risk.

The creation of INSYNC will without a doubt strengthen CSRG's relationship with sclero-derma research groups around the world who, like us, aim to better understand scleroderma and its symptoms in order to better treat people living with the disease.

What's next?

The next step is for each cohort to work on harmonizing their data with the data from the other cohorts. Data harmoniza-tion will allow comparisons, a key process aimed at better identifying similarities and differ-rences between scleroderma patients living in different coun-tries.

Thank you very much to our International

colleagues for attending this one-of-a-kind

meeting!

We are confident that this initiative will help

us to improve the life of people living with

scleroderma!

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Congratulations to our Trainees and Summer Students!!

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Trainee: Ilya Razykov Mentor: Dr. Brett Thombs Title: The Utility of the Patient Health Questionnaire-9 to Assess Suicide Risk in Patients with Systemic Sclerosis. Trainee: Ho, Yuen Yee Mentor: Drs. John Mort, Peter Roughley, and Anneliese Recklies Title: Chi3L1 production characterizes dermal cells in patients with systemic sclerosis Trainee: Daphna Harel Mentor: Dr. Russell Steele Title: Measuring Disease Severity in Patients with Systemic Sclerosis

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Trainee: Katherine Milette Mentor: Dr. Brett Thombs Title: Improving Depression Screening in Rheumatology Clinics: Detection of Persistent Versus Acute Depression in Scleroderma Patients Trainee: Monique Arts Mentor: Dr. Marc Servant Title: The effects of autoantibodies from scleroderma patients on blood vessel cells. Trainee: Irvens Fanélus Mentor: Dr. Anie Philip Title: Altered caveolin-1 function is linked to impaired receptor degradation in scleroderma

Our 2011-2012 Trainees

Our 2012 Summer Students

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Trainee: Edward Zhang Mentor: Dr. Marie Hudson Title: Electrocardiogram Abnormalities in Systemic Sclerosis Trainee: Charles Massie Mentor: Dr. Marie Hudson Title: Absence of correlation between anti-Ro52/TRIM21, anti-Ro60/SS-A and prolongation of corrected QT interval in systemic sclerosis: a multicenter study of 558 adult patients Trainee: Surya Sakr Mentor: Dr. Anie Philip Title: Dysregulation of TGF-beta signaling in Scleroderma: Role of Endoglin Trainee: Julie D’Aoust Mentor: Dr. Marie Hudson Title: Anti-PM/Scl antibodies are associated with a distinct SSc clinical phenotype

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Trainee: Achyuth Syam Chandra Mentor: Dr. Brett Thombs Title: The Efficacy of Opioid Antagonists on Pruritus Caused by Various Medical Conditions - A systematic review. Trainee: Katherine Thompson Mentor: Dr. Andrew Leask Title: Expression of CCN family members in fibroblasts Trainee: Mat Stephenson Mentor: Dr. Fritzler Title: Autoantibodies to 3-hydroxy-3-methylglutaryl-coenzyme A reductase (HMGCR) in the CSRG Cohort

Visit our website to read lay summaries of these projects: http://canadian-scleroderma-research-group.ca

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Ongoing CSRG Projects

Many projects have been spearheaded by CSRG researchers, clinicians, Trainees, summer students and collaborators since the Group's inception in 2004. Here are some of the projects that we have been focusing on in 2012:

Ø Soluble HLA in Systemic Sclerosis (Dr. Mervyn Gornitsky, Dr. Murray Baron) Ø Frailty and Scleroderma; investigation of a multi-system disorder (Dr. Evelyn Sutton

Dr. Kenneth Rockwood) Ø Autoantibody studies - Th/To, fibrillarin, HMGCR, Pm/Scl, ANA negative subjects (RF/CCP

subjects; Dr. Marie Hudson, Dr. Marvin Fritzler) Ø EKG - review of CSRG data and comparison with controls; QTc and Ro association (Dr. Marie

Hudson) Ø Disease activity and damage indices; global score for Medsger scale (Dr. Marie Hudson) Ø Different measures of DLCO in SSc (Dr. Marie Hudson) Ø Regional differences in autoantibodies and environmental exposures, comparing with controls

from Oral health study (Dr. Marie Hudson) Ø Investigation of ANA and ENA Negative SSc Sera (Dr. Marvin Fritzler, Dr. Marie Hudson) Ø Effect of menopause on skin thickening in systemic sclerosis (Evelyne Vinet, Dr. Sasha

Bernatsky, Dr. Marie Hudson, Dr. Murray Baron) Ø Longitudinal change and predictors of decline in FVC in the CSRG cohort (Dr. Marie Hudson,

Dr. Murray Baron, Dr. Russell Steele) Ø Mortality in a Retrospective Inception Cohort of Systemic Sclerosis (Dr. Mandy Nikpour , Dr.

Murray Baron, Dr. Patricia Carreira, Dr. Tracy Frech, Dr. Marie Hudson, Dr. Nicolas Hunzelmann, Dr. Janet Pope, Dr. Susanna Proudman, Ms. Maureen Sauvé, Dr. Wendy Stevens)

Ø What are the correlates of poor GI disease in a large, unselected cohort of SSc subjects (Dr. Genevieve Gyger)

Ø Microarray analysis of serum stimulated Scleroderma Fibroblast cells (Dr. Miltiadis Paliouras) Ø Salivary sHLA-G in Scleroderma Patients and Controls- A Pilot Project (Dr. Mervyn Gornitsky,

Daniel Salah) Ø Autoantibody studies - Th/To, fibrillarin, HMGCR, Pm/Scl, ANA negative subjects (with IP

data from Florida), RF/CCP subjects (Dr. Marie Hudon, Dr. Marvin Fritzler) Ø Reliability of digital ulcers outcome measurements in SSc (Dr. MurrayBaron)

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.

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CSRG Director: Dr. Murray Baron [email protected] National Study Coordinator: Suzanne S. Taillefer, PhD [email protected] Managerial support: Joanne D’Aoust [email protected] Active Recruiting

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 Dr. Nader Khalidi, Hamilton

We recently gave a new life to our website.

Please visit our new website:

www.Canadian-Scleroderma-Research-Group.ca

CSRG 3755, Cote Ste-Catherine Road

Room A725 Montréal, Québec

H3T 1E2

The CSRG has a NEW website

Canadian Rheumatology Association (CRA) Date: February 13th-16th, 2013

Location: Fairmont Chateau Laurier, Ottawa, ON

For more information:

http://www.rheum.ca/

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:

[email protected]

In 2012… Ø Over 1350 scleroderma patients across Canada were

being assessed annually and entered in our patients registry. Of those, 52 were new patients enrolled in 2012. Thank you!

Ø We received over $130,000 in donations to help with our research projects and research activities. Thank you!

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Dr. Maggie Larché, Hamilton Dr. Sophie Ligier, Montréal Dr. Ariel Masetto, Sherbrooke Dr. Janet Pope, London Dr Jean-Pierre Mathieu, Montréal Dr. David Robinson, Winnipeg Dr. Evelyn Sutton, Halifax Dr. Carter Thorne, Newmarket Collaborators: Dr. Sasha Bernatsky Dr. Marvin Fritzler, Adv. Diagn. Lab. Dr. Mervyn Gornitsky, DDS Mr. Phil Hughes, Patient

Representative Dr. Mohit Kapoor Dr. Kevin Keen, Statistician Dr. Dinesh Khanna, UCLA Dr. Andrew Leask Dr. John S. Mort Dr. Warren Nielson, Psychologist Dr. Anie Philip Dr. Anneliese Recklies M. Normand Ricard, Scleroderma

Society of Canada & Sclérodermie Québec

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Dr. Peter Roughley Ms. Maureen Sauvé, Scleroderma Society

of Canada & Scleroderma Society of Ontario

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

Don’t hesitate to contact Suzanne S.

Taillefer if you have any questions about the CSRG, its activities, or this

newsletter: [email protected]

Please visit our NEW website: Canadian-Scleroderma-Research-Group.ca

CSRG Winter 2013 Newsletter

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Transcript of CSRG Winter 2013 Newsletter