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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:
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To collaborate
fully with the Canadian Scleroderma Research Group in the development and utilization of a scleroderma patient database
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To reserve up to
$10,000 to meet actual maintenance costs of the Group database during its second year of operation
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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: [email protected]. 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: [email protected]
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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.