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Canadian Scleroderma Research Group |
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November, 2003 |
A Newsletter Volume 1, Number 2 |
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Scleroderma
Society Goals: ·
To
collaborate fully with the Canadian Scleroderma Research Group in the
development and utilization of a scleroderma patient
database ·
To
reserve up to $10,000 to meet actual maintenance costs of the Group
database during its second year of operation ·
To
generate up to $100,000 to support data collection and entry needs when
CIHR funds are exhausted Sometime
you just have to have the right conditions to see that extra bit of
beauty.
Rheumatologists: Dr.
Maysan Abu-Hakima, Calgary
Dr.
Murray Baron, Montreal
Dr.
Mary Bell, Toronto Dr.
Arthur Bookman, Toronto
Dr.
Peter Docherty, Moncton Dr.
James Dunne, Vancouver Dr.
Marvin J Fritzler, Calgary Dr.
Marie Hudson, Montreal Dr.
Elzbieta Kaminska, Hamilton Dr.
Sharon Le Clercq, Edmonton Dr.
Jean-Luc Senecal, Montreal Dr.
Douglas Smith, Ottawa Dr.
Evelyn Sutton, Halifax Our
Collaborators: Mr.
Robert Buzza, President,
Scleroderma Society of Canada Dr.
Gad Freidman, Gastroenterologist Dr.
Andrew Hirsch, Respirologist Dr.
Caroline Pukall, Psychologist Dr.
Lawrence Rudski, Cardiologist Dr.
Ian Shrier, Epidemiologist Dr.
Russell Steele, Statistician |
Scleroderma Society of Canada Rheumatologists may not be aware of the details of this group which has pledged to support our national computer database. The Scleroderma Society of Canada is comprised of 13 Members that function autonomously in their particular province, and work together nationally to promote awareness of scleroderma, to aid those affected by it, and to support research about it. Cure and eradication are the overriding goals. There are Members in every province. Member size, based on fees paid, ranges from four to seven in the Atlantic provinces, to 776 in Sclerodermie Quebec. Annual general meetings are held in a different province each year. The next one will be held in Richmond, BC on September 18, 2004. Among the speakers will be Los Angeles-based Dr. Daniel Furst and Elaine Furst, Chair of the Board of the U.S. Scleroderma Foundation. The Society was formed in1999, and was registered as a charity in 2000. It has developed a Business Plan for internal and fundraising purposes. Its website www.scleroderma.ca receives more than 20,000 “hits” annually. It publishes “Strides”, a quarterly newsletter. It has just begun a long-term fundraising campaign involving collection and reuse of toner and inkjet cartridges. The current president is Bob Buzza who can be reached toll free 1-866-279-0632, or via email at: rmbuzza@ret.bctf.ca. Capillaroscopy Various abnormalities of the nail fold blood vessels
are common in Scleroderma.
Most of us no longer look for these abnormalities because the
usefulness of finding them is somewhat However, there may be a role for re-introducing the assessment of these capillaries. We know that about 20% of patients with Scleroderma are not picked up by the current diagnostic criteria of the American College of Rheumatology. We have hypothesized that abnormal capillaries may be useful in classifying this group of patients. If so, then that would mean that these patients, although already treated as having Scleroderma by their rheumatologist, would no longer be excluded from studies that require fulfillment of a set of diagnostic criteria. Performing capillaroscopy with the traditional widefield microscope is not feasible at most sites. Many of us already use the opthalmoscope for this purpose. We are planning a study to determine whether the opthalmoscope is as accurate and reliable as the microscope. If that turns out to be the case, then the next step will be to do capillaroscopy routinely on patients in our database and determine if the results are of value in creating a new set of diagnostic criteria that would pick up at least some of the 20% of patients that are missed by the current criteria. Ethics Committee Approvals Although we do not yet have funding, the data collection protocols are basically complete and ready to be tested.
We are certain that the learned members of the various committees would like a project such as ours to get their teeth into before the holidays ! |
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C/O Murray
Baron, MD Suite
A216 3755
Cote St Catherine Rd Montreal H3T
1E2 Tel:
514-340-8231, fax:514-340-7906, email:
mbaron@rhu.jgh.mcgill.ca
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CIHR Grant Application Submitted Set 15, 2003 Still waiting
to hear from them…….. We
STILL Need a Creative Volunteer
Who
would like to take on the task of getting this newsletter out every few
months ? Not
only should we communicate
with each other, but we must let others know where we are and where we
want to go. Raising
funds for our project will be a key to our success and our lay partners
have already seen that our start is rising and have expressed an interest
in helping us. We
will need their expertise and enthusiasm for raising funds to keep our
project on its feet.
Everything we can do to maintain communication with potential
fundraisers, and to let them share our excitement, will be helpful and
will undoubtedly bear fruit in the future. Please,
if you think you can do this job and make this important contribution to
our project, contact Murray Baron in Montreal. |
limited
in clinical practice. 
Each
site should now consider going ahead and submitting the protocol to their
ethics committee for approval.