Australian Childhood Vision Impairment Register

RIDBC Renwick Centre

Parent/Guardian and Older Child Information Statement for the Research Project:
The Australian Childhood Vision Impairment Register

Document version 17; Wednesday 3rd December 2014

Please read this statement before proceeding to the consent form:

Dear Parent/Guardian,

This letter is to inform you about the Australian Childhood Vision Impairment Register. The Register is a database of clinical information about childhood vision impairment. The Register aims to provide a national picture of childhood vision impairment to be used in planning and delivering better services for children. The findings will also be used in research into eye and vision conditions which cause vision impairment in childhood.

Participation is open to children aged 0-18 years who have vision impairment in both eyes, diagnosed by an ophthalmologist or eye doctor. We would like all children with vision impairment to participate as this will help us to get an accurate picture of the numbers. Participation in the study is up to you, however if you decide not to participate, you will not be disadvantaged in any way.

Q: What will you be asked to do?

If you agree to register your child we will ask for information from your child's eye health professional. Alternatively, if you have access to a report written on your child in the last two years by their eye health professional, you can supply us a copy of this report. We will retrieve the information on your child from this report, record this information in our database and then we will destroy the report. We will also ask you to complete the enclosed Parent/Guardian Consent Form and the Parent/Guardian Data Form. These forms take about 10 minutes to complete. Also, if you agree we will send your child a welcome certificate for joining the Register.

Q: How safe is the information in the register?

Very safe. Your confidentiality and privacy are strictly observed at all times. The information is stored on a secure database and no information that can identify you or your child is revealed in the use of the data. We keep your child's data until he or she reaches their 18th birthday. When they turn 18 we will ask them directly if we can hold onto their de-identified data for another 5 years.

You are welcome to see all the information held about your child. If you wish you can ask for information to be removed. You or your child can decline to have your child's information included on the Register or withdraw the information at any time.

Q: How do I register my child?

Please read this information sheet and make sure that you understand it before you agree to register your child. If you do agree to register your child please complete the enclosed Parent/Guardian Consent Form and the Parent/Guardian Data Form. You can do this using paper forms or online using our website at: vifamilynetwork.org.au. If you prefer you can contact Register staff who will help you complete the forms on the telephone: 02 9872 0248. You can also email Register staff for help: acvir@ridbc.org.au.

Q: Where can I get further information?

You can contact Sue Silveira using the address on this page. This document is also available in large print, in various community languages, Braille and on MP3. You can also visit our website at vifamilynetwork.org.au.

Thank you very much for considering registering your child with the Australian Childhood Vision Impairment Register.

Susan Silveira

Telephone: +61 2 9872 0248
Facsimile: +61 2 9873 1614
Campus: 361-365 North Rocks Road North Rocks NSW 2151 Australia
Postal Address: Private Bag 29 Parramatta NSW 2124 Australia

Register my child online

Please read this information sheet and make sure you understand it before you agree to register your child. You are encouraged to print a copy of this Parent Information Statement for your own records.

You may also like to print a Child Information Statement if appropriate for your child.


Complaints about this Research:

This project has been approved by the Hunter New England Human Research Ethics Committee, Reference Number 08/09/17/5.04. Should you have concerns about your rights as a participant in this research, or you have a complaint about the manner in which the research is conducted, it may be given to the researcher, or, if an independent person is preferred, to the Hunter New England Human Research Ethics Professional Officer, Hunter New England Research Ethics Unit, Locked Bag 1, New Lambton, NSW 2305. Telephone: (02) 4921 4950.

If you prefer to contact a particular Human Research Ethics Committee, please select from the following:

If your child has eye or vision care at Royal Children's Hospital, Victoria

If you have any concerns about the project or the way it is being conducted, and would like to speak to someone independent of the project, please contact: Head of Department, Ethics and Research Department, Human Research Ethics Committee, The Royal Children's Hospital Telephone: (03) 9345 5044

If your child has eye or vision care at Flinders Medical Centre, South Australia

This study has been reviewed by the Southern Adelaide Clinical Research Ethics Committee. If you wish to discuss the study with someone not directly involved, in particular in relation to policies, your right as a participant, or should you wish to make a confidential complaint, you should contact the Executive Officer, Southern Adelaide Clinical Research Ethics Committee on (08) 8204 4507 or email research.ethics@health.sa.gov.au

If your child has eye or vision care at Woman's and Children's Hospital, South Australia

This study has been reviewed by the Women's and Children's Health Network Human Research Ethics Committee. If you wish to discuss the study with someone not directly involved, in particular in relation to policies, your right as a participant, or should you wish to make a confidential complaint, you should contact the Secretary of the Committee, Brenda Penny, HREC, CYWHS, 72 King William Road, North Adelaide 5006. Telephone (08) 8161 6521. Email brenda.penny@health.sa.gov.au

If your child has eye or vision care at Princess Margaret Hospital, Western Australia

If you have any concerns or complaints regarding this study, you can contact the Director of Services at PMH (Telephone No: (08) 9340 8222). Your concerns will be drawn to the attention of the Ethics Committee who is monitoring the study.

If your child has eye or vision care at Royal Victorian Eye and Ear Hospital, Victoria

If you have any complaints about any aspect of the project, the way it is being conducted or any questions about your rights as a research participant, then you may contact the HREC Secretary Telephone: (03) 9929 8525.