Patient Registry
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How To - |
How to - |
* Please note: this form is ONLY for patients enrolling to the The Hospital of Sick Children Patient Registry. For patients enrolling to the University of Alberta registry please see contact info below to contact the University of Alberta for a consent form and more information on how to enroll.
** Please note: this form is ONLY for patients enrolling to the The Hospital of Sick Children Patient Registry. For patients enrolling to the University of Alberta please see contact info below to contact the University of Alberta for more information.
Purpose of the Patient Registry:
Foundation Fighting Blindness-Canada and CIBC have awarded Dr. Héon a grant to develop a National (Canada) Children’s Vision Research Registry, which is a medical information database that will capture patients affected with retinal dystrophies.The purpose of capturing these patients is to better understand the natural history of retinal dystrophies, standardize clinical assessment, and most importantly identify patients that could be eligible for clinical trials and/or other therapeutic opportunities that may become available in the near future.
This registry has the potential of expanding into a multi-centered project, but for now it will only involve patients at the Hospital for Sick Children (SickKids).
Description of the Research:
The Patient Registry is an internet-based medical registry for retinal dystrophies. Retinal dystrophies are a group of genetic eye disorders that affect the retina of the eye. The retina is an important layer at the back of the eye, which picks up light and sends images to the brain. People who have a retinal dystrophy cannot see as well as other people because their retina is not working properly.You are asked to be part of The Patient Registry. This medical database will allow scientists/physicians access to large amount of medical information that will allow them to better understand the natural history of retinal eye disorders such as the one in your family. This project will ultimately provide you and other patients, with retinal eye disorders, the opportunity to be studied by other doctors, which will allow them to determine you eligibility for clinical trials and/or new treatments that may become available in the near future.
No immediate benefit from participating in this study is expected. However, when clinical trials and other therapies become available in the future, your eligibility for treatment will be determined and you will be managed following the standard of care protocols in place at SickKids. If we also find that you are eligible for any new Foundation Fighting Blindness and SickKids Research Ethics Board approved research projects that develop from the Patient Registry you will be notified.
You will be informed of any changes made to the study or new information that might affect your willingness to continue to participate in the research.
ALL PROVINCES (except Alberta)
If you are applying for the registry and are from British Columbia, Saskatchewan, Northwest Territories, Yukon, Manitoba, Ontario, Quebec or any of the Maritime provinces please follow the instructions below:
How to Enroll
Patients who are not from SickKids and wish to be part of the registry need to:- Download a copy of the consent form. Read it carefully, sign and return p.5 to:
Attn: Ms. Catherine Deveault
The Hospital for Sick Children
Ophthalmology and Vision Sciences Research Institute, Dr.Héon’s Laboratory
TMDT, RM 15-303
101 College St.
Toronto, ON, M5G 1L7 - Download a copy of the “data collection form” and ask your eye specialist to fill it OR ask you eye specialist to send us a copy of your chart and send it to the address above.
- Request that genetic testing be initiated his/her eye care provider or through one of the five ocular genetic centres in Canada.
- Once the eye report and signed consent form have been returned to SickKids, the patient information will be entered into the Registry. Once you have results from the genetic testing, please forward them to us at the address above so that they can be entered in the Registry.
*Please note: If a patient has not seen his/her ophthalmologist recently (within the last five years); it is recommended that an update assessment be included in the vision report so we know the most recent vision status of the patient.
Patients who are seen at the Sick Kids ocular genetics clinic may have already received a copy of the Patient Registry Consent Form. We ask these patients to please:
- Complete and return the Consent Form to SickKids at the address mentioned above. Data will then be collected from your chart and you will be entered in the Registry.
- If you have not given blood for DNA testing he/she should contact the SickKids Genetic Counseling office at 416-813-7822 to arrange for this to be done.
ALBERTA
If you are applying for the registry and are from Alberta, please contact the University of Alberta for more information on how to enroll:
| Shelly Benjaminy Research Student University of Alberta sbenjami@ualberta.ca |
Georgie Jarvis Research Coordinator University of Alberta 780.735.4986 |