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<Psoriatic Arthritis Newsletter>
Introduction
What is
Lupus?
Why is The
University of Toronto Lupus Clinic Special?
Why a lupus
databank?
What have we
learnt from this research?
Research Awards
Current
Studies
The Lupus Clinic is located at the Centre
for Prognosis Studies in the Rheumatic Diseases at The Toronto Hospital,
Western Division. The Centre provides a very comfortable environment
for our patients. It has a large waiting area which is in close proximity
to the coffee shop and the Pharmacy. Moreover, the laboratory for
routine blood tests is within the Clinic facility, and the x-ray department
is just down the corridor, making it much easier for patients requiring
these tests. The Centre also provides an improved research facility
for our studies. The physicians working at the Centre are now in
close proximity to the "laboratory" which includes research assistants,
biostatisticians and programmers, as well as extensive computer equipment.
This environment will further facilitate and enhance our research endeavors,
helping us to get closer to the understanding of SLE and the development
of a cure.
Several patients attending the Lupus Clinic
have asked about the results of research studies which have taken place
at the Clinic. The purpose of this annual newsletter is to
update our patients on recent advances in research and treatment and to
provide information about current studies being carried out at the Lupus
Clinic. Since there are continually new patients entering
the Clinic, we will start by providing some basic information about the
disease.
Most patients know that systemic lupus erythematosus
(SLE) is considered an autoimmune disease. Under normal conditions,
the immune system plays a key role in protecting the body from harmful
agents such as viruses and bacteria; in SLE however, antibodies are
directed against oneself.
In patients with SLE, the immune system produces
a number of antibodies that react with cell components resulting in chronic
inflammation in different parts of the body. Lupus strikes 1 in 1000
Canadians, mainly women in the child-bearing years. For anyone interested
in more detailed information about the nature of SLE, information
brochures and suggested reading lists are available at the Clinic or the
Ontario Lupus Association at (416) 979-7228.
WHY IS THE UNIVERSITY OF TORONTO LUPUS CLINIC SPECIAL?
The Lupus Clinic is directed by Dr. Murray
Urowitz and Dr. Dafna Gladman, rheumatologists associated with the University
of Toronto Rheumatic Disease Unit.
The Lupus Clinic was first established
as a patient care referral centre in 1970 and was designed to promote expert
care for patients with lupus, to train future rheumatologists and
to facilitate research into this disease.
There are now over 840 patients registered in the Lupus Clinic, making
it one of the largest centres for specialized lupus care and research internationally.
Patients are referred to the Clinic from all areas of Ontario. A
large proportion of patients are receiving their primary lupus care at
the Clinic. Some patients are followed by their local
rheumatologists, but continue to be followed in the Clinic at intervals.
Patients are evaluated by a physician, usually
a rheumatology trainee, who is particularly interested in this disease.
All patients are reviewed by staff doctors, Dr. Urowitz or Dr. Gladman,
either in person or by chart review. In this way, patients are evaluated
in a standard way according to a specially designed format, which includes
physical examination, blood and urine tests at each visit.
Because each patient's disease pattern is
different, it is difficult for the physician to compare patients and find
commonalties in treatment. We recognized the need for long-term epidemiologic
study to discern the natural history and response to therapy in this disease.
This involved ongoing observation and tabulation of clinical features,
treatment and its effects on many patients over a prolonged period of time.
This type of medical research requires extensive computer equipment and
appropriate personnel and of course special funding.
To meet the growing financial needs the Lupus
Databank Research Program was established in 1987. With the assistance
of volunteers, many of whom were patients at our Clinic, funding has been
raised through personal donations, special events and grants from foundations
and corporations.
Data have now been prospectively gathered
and computerized on all patients seen in the Clinic since 1970. At
each clinic visit over 200 specific items of information are collected
using a standard data collection protocol. This information is then
entered onto computer where patient confidentiality is maintained by use
of study numbers.
WHAT HAVE WE LEARNT FROM THIS RESEARCH?
Early studies from the Clinic include:
· Descriptions of major manifestations
in lupus which led to the recognition of atherosclerosis as a complication
of SLE and its treatment.
· Description of subsets of lupus
manifestations associated with specific auto antibodies. This enables physicians
to better predict the course of one's disease depending upon the antibodies
present.
· We have reported on a study of pregnancy
in lupus, which has shown that, contrary to previous belief pregnancy is
not contraindicated in lupus patients.
· We reported on the use of hormone
replacement therapy (HRT) in women with SLE. HRT has proven
beneficial in preventing bone loss in post menopausal women in the general
population. Until recently, it has been thought that HRT or contraceptive
use may be linked to lupus flares. In this study we compared the incidence
of flare in women receiving HRT with women not using HRT and there was
no statistically significant difference in the rate of flares in both groups.
This pilot study would indicate that the use of HRT in post menopausal
women with SLE does not appear to increase the rate of lupus flares.
· The University of Toronto Lupus
Clinic has also been instrumental in the development of standardized outcome
measures which allow physician-researchers to better measure and describe
the course of lupus and its response to new therapies. These outcome
measures are now widely used by lupus researchers internationally allowing
for comparison of large populations of patients.
The caliber of research being carried out
at our Clinic was recognized at the American College of Rheumatology (ACR)
Annual meetings in October 1996, with two of our rheumatology trainees
receiving the ACR Senior Rheumatology Scholar Award, based on projects
they carried out in our clinic. These awards are given to only
10 rheumatology fellows internationally for meritorious work in their final
year of training. Dr. Proton Rahman received the reward for a projects
he submitted looking at fetal outcome in lupus, that is how well babies
born to women with lupus do, and a project looking at the use of cytotoxic
or immunosuppressive drugs in the treatment of SLE. Dr. Rahman was
also the recipient of the Canadian Rheumatology Association Ian Watson
Award for this work. Dr. Rahman worked in our SLE Clinic in
his second year of rheumatology training, and is currently working toward
a masters degree in genetic epidemiology, again using the Lupus Clinic
as his focus population. Dr. Rahman has since completed further studies
looking at SLE treatment trends, including the use of methotrexate in antimalarial-resistant
lupus arthritis. This study has shown that methotrexate is an effective
treatment of arthritis in patients who could not use other standard therapies
due to side effects or lack of response. Dr. Rahman has also looked
at the effect of smoking on the effectiveness of antimalarial therapy in
SLE, particularly for skin manifestations. Antimalarials are a standard
treatment for skin involvement in SLE, and this study has shown that the
efficacy of antimalarial therapy is considerably decreased in those patients
who smoke. We plan on further studying the specific metabolic factors
involved in the interaction between smoking and treatment efficacy.
Dr. Benjamin Wang received the ACR Senior
Rheumatology Scholar Award for his research on genetic studies in a lupus
family. Dr. Wang has also completed studies looking at the
role of fatigue and fibromyalgia in lupus. These studies have shown
that fatigue, although a very prevalent complaint of SLE patients, is not
necessarily associated with disease activity, but does have a great impact
on quality of life. The role of fatigue and fibromyalgia needs to
be further delineated to allow the accurate measurement of the impact of
new therapies on SLE.
Dr. Ian Bruce, the Ontario Lupus Association Geoff Carr Lupus Fellow, has taken a keen interest in the important area of heart disease in lupus. He presented the results of a quality improvement study looking at how potential risk factors for heart disease, such as hypertension, obesity, high cholesterol, etc., have been handled in the past and the effect of interventions of these risk factors. We plan to implement further studies looking at the effectiveness of interventions such as diet and drug treatment for high cholesterol and the effect of lupus treatments on cholesterol. Dr. Bruce is also participating in a study of detection of atherosclerosis in lupus as described on page 4.
We are also expanding our research into the area of genetic studies in SLE. Samples on over 200 SLE patients have now been obtained for DNA isolation for genetic typing. With this research, we hope to identify specific genetic subtypes associated with SLE and its various manifestations. The results are currently being analyzed and we hope to present this work in the near future. This project is also funded by the Canadian Arthritis Society.
In summary, we have completed several exciting projects over the last year. We hope that patients and their families will continue to support our efforts. On the following pages, we will outline some of the specific studies currently being carried out at the Clinic.
We have outlined in our newsletter results of some of the research carried out to date. None of this important research would be possible without the ongoing support and participation of our patients.
In this section, we will outline the projects for which we are currently asking for patient participation. Remember, the more we are able to learn about SLE, the more treatment options will be provided and eventually a cure for this disease will be found. To participate in any of these studies you must be an SLE patient followed at The University of Toronto Lupus Clinic.
If you are interested in participating in any of these studies, or would like further information, please inquire.