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Becoming Part of the Foundation Fighting Blindness Patient Registry 

The Foundation Fighting Blindness Patient Registry is a tool to help connect people living with inherited eye diseases to scientists studying these conditions. People with retinitis pigmentosa, Stargardt disease, Leber congenital amaurosis and all other inherited forms of retinal degenerative disease are welcome to participate.

The database was first established at the Hospital for Sick Children in Toronto under the direction of Dr. Elise Héon. It was initially supported through a funding partnership between the Foundation Fighting Blindness and CIBC. The database has now expanding to centres across the country with enrollment sites established in Vancouver and Edmonton and supported by a generous donation from Ledcor. Sites in eastern Canada are also planned.

Here are some common questions about the registry:

How does it work?
What research might be conducted using the registry?
How do scientists get access to the database?
How might a scientist leading a clinical trial use the registry?
Will my information be secure?
Can genetic testing be arranged through the database?
How can I sign-up?

If you have additional questions about the registry and its processes, please email or phone the contact individual listed for the enrollment centre in your area.

How does it work?

People diagnosed with retinal degenerative diseases agree to submit records to the registry. Records in the registry include details of your diagnosis, personal medical and family history of eye disease and your retinal examinations, as well as any other testing, including genetic testing that you have had. Click here to see the data collection form.

Database records are filed under a code number; only your caregivers at the site where you enrol can link your name and contact information to this number.

Scientists studying retinal eye disease can approach the advisory committee of the registry and ask for access. If granted, they will be able to search the database and obtain data for use in expanding their research studies, but they will not be able to access your name or identifying information.

 

What research might be conducted using the registry?

The database will be used to study how retinal eye diseases develop and how these conditions can be better diagnosed and treated. For example, a scientist might search the database for the records of people with a particular genetic type of disease. They could then determine the average age at which people with this mutation had early signs of disease or major vision loss giving better information to doctors and families.

Scientists conducting clinical trials for potential treatments will be encouraged to use the registry to find participants. Such trials have only recently begun to happen, but the Foundation Fighting Blindness believes that the Registry will be a major resource to encourage Canadian clinical trials.

How do scientists get access to the database?

Scientists must apply to the Patient Registry Committee for permission to use the database. This committee consists of representatives from each of the registry sites. The scientists must share details about the research they are going to do, and they must give evidence that their research is being done under the supervision of an established research ethics board at a university or hospital.

Dr Kevin Gregory-Evans at the University of British Columbia chairs the Foundation Fighting Blindness Patient Registry Committee. Other members of the commitee are:
Andrew Burke (Foundation Board and person living with retinal disease)
Dr. Jane Green
Dr. Elise Héon
Dr. Ian MacDonald
Dr. Bill Stell


How might a scientist leading a clinical trial use the database?

Clinical trials usually require very specific groups of participants so that the scientist can collect clear information about the possible benefits of the therapy. People in the trial must be of a particular age and have specific conditions and symptoms or a particular gene mutation. In the initial stages, a researcher might search the database to get basic information about the number of Canadians who might be eligible for their trial.

Once the scientist is ready to begin the trial, he or she could generate a list of reference numbers of people eligible for the trial and notify the registry staff. The reference number will tell the registry staff where you enrolled in the registry. You will then be contacted by your doctor and advised about the trial. Being part of the registry does not in any way obligate you to be part of a clinical trial; you can always say NO, but being entered in the registry will give you the option of knowing about these trials and making a decision about participating.

 

Will my information be secure?

Absolutely. Many safeguards are in place to ensure that your information is only used in ways that you have agreed to and that identifying information about you cannot be released without consent. Research ethics boards associated with each enrollment site have reviewed all of the procedures and protocols and will continue to monitor the functioning of the database. As the program expands, the plans for other centres will undergo similar reviews. Scientists will be able to search records from all centres in a single search, but identifying information about you will only be held in the centre where you enrol.  

Can genetic testing be arranged through the database?

Not at this time, although that is something we continue to explore. However you are encouraged to have genetic testing done, and to submit these records to the database. If you would like to learn more about genetic testing, please review these genetic testing resources.
 

How do I sign up?

If you wish to be part of the registry, you will enrol at one of the growing number of regional enrolment centres across Canada. Staff at these centres will talk with you about how your information will be used and answer any additional questions you have about the registry. They will then ask you to sign a consent form agreeing to participate in the registry. All of this can be done remotely by phone or email.

Once you have consented to the study, a data collection form will be used to collect the standardized information needed by the registry. If your specialist is based at the registry site, he or she will complete the data collection form and submit it; otherwise you will be given a data collection form to take to your local eye specialist. The following table offers contact information, for each of the current enrollment sites.

 

If you live in...
Institution and Site Leader
Contact
British Columbia
Eye Care Centre, Vancouver General Hospital
Dr. Kevin Gregory-Evans
Yvonne
778-968-4349 (phone)
Alberta
University of Alberta
Dr. Ian MacDonald
Stephanie Chan
780-735-6588(phone)
Maritimes
Dr. Johane Robitaille
IWK Health, Halifax
Ashley Aalders
902-470-2742
Ontario, Saskatchewan, Manitoba, Quebec,  Newfoundland and Labrador, The Northwest Territories, Nunavut or the Yukon
Hospital for Sick Children, Toronto
Dr. Elise Héon
Aparna Bhan
416-813-1500 ext. 301511 (phone) aparna.bhan@sickkids.ca
See below for more details about enrolling in the registry as a patient at Sick Kids hospital and from outside the hospital.

 

 

Enrolling through the Ocular Genetics Clinic at Sick Kids Hospital in Toronto

The process for enrolling into the registry via Sick Kids Hospital varies for patients at the hospital, and for those submitting records to the hospital from other parts of Ontario or from outside the province. If you have questions about this process, please direct them to the contact person above.

Patients who are not from SickKids and wish to be part of the registry

If you want to be part of the registry and live in parts of these country where no enrolment site exists, you will need to:

1.     Download a copy of the appropriate consent form. Read it carefully, sign and return it to the address below. There are different consent forms depending on to age of the person enrolling:

When the person enrolling in the registry is over 18, please use the adult consent form.

When the person enrolling is under 18, there are two forms - an assent form to be signed by the child and a parental consent form for the parents. Please download and sign both forms.

All consent forms should be returned to the following address:

Attn: Ms. Aparna Bhan

The Hospital for Sick Children
Peter Gilgan Centre for Research and Learning (PGCRL)
Room 149710, 686 Bay Street
Toronto, ON  M5G 0A4

2.     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 at the address above.

3.     Request that genetic testing be initiated by your eye care provider through a genetic testing centre.

4.     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 you have not seen your 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

If you receive care at the Sick Kids ocular genetics clinic, you may have already received a copy of the Patient Registry Consent Form.  We ask these patients to please:

1.     Complete and return the Consent Form by mail to SickKids at:

Attn: Ms. Aparna Bhan

The Hospital for Sick Children
Peter Gilgan Centre for Research and Learning (PGCRL)
Room 149710, 686 Bay Street
Toronto, ON M5G 0A4

Data will then be collected from your chart and you will be entered in the registry.

2.     If you have not given blood for DNA testing, contact your family doctor and asked to be referred to the Genetic service in your area for genetic counseling and molecular genetic testing (see Research Fact Sheet~Genetic Testing). The Canadian Association of Genetic Counsellors offers a listing of these clinics at http://cagc-accg.ca

3.     SickKids Ocular Genetics programme requires referrals be sent from physicians using www.sickkids.ca/referralsystem or by fax to the eye clinic at 416-813-6261. Preference is given to affected patients under age 18.

All patients who have been seen at the Ocular Genetics Clinic of SickKids are encouraged to sign the consent so that they will be part of the registry.

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