Hello Canadian cysters! Just wanted to let you know:
The
UBC Center for Reproductive Health is conducting a study on Canadian women with PCOS in order to increase medical knowledge about PCOS.
What’s the Reason for a Registry?
The cause(s) of PCOS in not known but there are various theories. Some investigators think the basic problem is insulin resistance, others that there was increased androgens from the adrenal at the time of early puberty (exaggerated adrenarche). Genetic factors and prenatal events causing low birth weights have also been proposed. Some of these theories explain secondary features and fall short of identifying any primary trigger(s).
So far there is no actual cure for this condition, and treatment involves managing the most significant symptoms or clinical problem(s) at any given time. However, when therapy is discontinued, the tendency is to revert back to the pre-treatment status. We do
not know what happens to women with PCOS as they age. Do problems get worse? Better? Which therapies or interventions produce the best long-term benefits?
In an attempt to obtain answers to such questions and to increase medical knowledge about PCOS, a
voluntary registry has been set up.
What is a Voluntary Registry?
A
registry is a formal method of collecting and saving information about patients with a particular medical problem, in this case
Polycystic Ovary Syndrome (PCOS). The desired information is provided either by directly contacting the Registry yourself or by information forwarded by your physician or laboratory,
with your express permission. Basic detailed information is obtained and recorded at the time you first become a registrant, and then again by phone surveys or personal interviews, when data is periodically updated (usually on an annual basis). This registry is
voluntary in nature, and therefore
you may withdraw from it at any time. What Requirements are Necessary for Joining the Registry?
To be included in this registry you must have fulfilled the criteria for the diagnosis of PCOS. That is you must have either longer than normal cycle intervals (>35 days) or irregular cycles, or absent cycles. In addition, you must have symptoms or laboratory evidence of androgen or male hormone excess. And finally, these changes must not be due to another endocrine or hormone disorder.
What Kind of Information will the Registry Collect?
The type of information being recorded into the data banks would include demographic questions (eg. Age, occupation, education, ethnicity), clinical symptoms and findings (eg. Hirsutism, cycle changes, weight problems) as well laboratory results (hormone levels, ultrasound results, biopsy results etc).
How will you Ensure that my Medical Information is Kept Confidential?
All information is strictly confidential and to ensure this, an identification number (registry number) will be assigned to your name. The registry number (not your name) will be used to identify any information that is placed on the computer database. All documents will be identified only by code number, and the key for this code will be kept in a separate secure area. You will not be identified by name or number in any of the reports or studies that result from review or analysis of this data.
Where is the PCOS Registry Located?
The Registry is located at the BC Women’s Hospital & Health Centre (room D-407), 4500 Oak Street, Vancouver, within the Division of Reproductive Endocrinology.
Who are the Physicians Involved with the PCOS Registry?
The registry will be coordinated by three physicians:
1)Dr. Anthony Cheung Division of Reproductive Endocrinology and Infertility Department of Obstetrics and Gynecology, UBC BC Women’s Hospital & Health Centre Rm D407 – 4500 Oak Street, Vancouver, B.C. V6H 3N1 Phone 604-875-2424 Ext: 2591 2)Dr. Sheila Pride Division of Reproductive Endocrinology and Infertility Department of Obstetrics and Gynecology, UBC BC Women’s Hospital & Health Centre Rm D407 – 4500 Oak Street, Vancouver, B.C. V6H 3N1 Phone 604-875-2424 Ext: 5685 3)Dr. Sabrina Gill Division of Medical Endocrinology Department of Internal Medicine, UBC Saint Paul’s Hospital-Commox Building Room 468, 1081 Burrard Street, Vancouver, B.C. V6Z-1Y6 Phone 604-806-8594
This study is only available to Canadian women.
If you would like to participate in the registry please send an email to
pcosregistry@gmail.com including your name, address, e-mail and phone number. You will also need to include a signed consent form which can be viewed and printed from
http://MistyRios.fileave.com/PCOS Consent Form.pdf
The consent form can be directly scanned and emailed to the same address or faxed to
604-875-2557 Attention Drs. Cheung / Pride
If you need any more information please feel free to send me a message and I will try to answer to the best of my ability. Otherwise you can always send your questions directly to the PCOS Registry at the above email. Please be advised that they do take a while to respond to the emails they accept, but they will get back to you.
Thanks for your contribution in finding a cure for PCOS.