ACVIRNewsletter

April 2018

WelcomeThis newsletter updates information available from the Australian Childhood Vision Impairment Register.

What is the Australian Childhood Vision Impairment Register (ACVIR)?

ACVIR was initially developed to gather data on children living in Australia who have vision impairment. This data is essential as children with vision impairment need integrated and specialised services including health, education, and low vision support. To help plan these services, accurate data is required on the number, causes and needs of children with vision impairment and their families. Before ACVIR there was no coordinated gathering of this data.

The Royal Institute for Deaf and Blind Children sponsors the Australian Childhood Vision Impairment Register, in partnership with families and children with vision impairment, key Australian service providers, health professionals, and government departments.

Information from the Register is being used to more accurately plan for the present and future service needs of children with vision impairment. It is also available to researchers who are investigating the many causes and potential treatment for conditions related to vision impairment. All information on the Register is held in the strictest confidence, and families can withdraw from the Register when they wish. ACVIR has ethics approval in every state and territory of Australia.

Sue Silveira

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Why have a Register?

To ensure success from the Register, it is vital to have as many children with vision impairment involved as possible. Details of the Register and online registration can be found at the website that supports the project called the VI Family Network, located at: www.vifamilynetwork.org.au.

How do I register my child?

Families can register online at www.vifamilynetwork.org.au or request registration forms by calling (02) 9872 0248. Once they have registered their child, families are asked to provide brief details related to their child’s vision impairment, and for consent for ACVIR staff to contact their child’s eye health professional, for similar details on the child’s condition.

Enquiries can be made by emailing: acvir@ridbc.org.au.

What’s new on the VIFN website?The VIFN website, which is updated weekly, aims to provide you with up-to-date information and resources to use. Have a look at the site – we’d love to know what you think of it.

Spotlight: Information on Eyes and Vision

We update this resource regularly. There are links to organisations which can provide you with information on eyes and vision.

A good example of this is http://learninghub.royalblind.org/ which has a great glossary, providing very simple definitions of terms relating to eyes.

If you access any source which provides information on eyes and vision which you think other families would benefit from, please email us and we’ll endeavour to add it to this section. Click on the link below to access the VIFN website:

http://vifamilynetwork.org.au/

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Learn Braille online resource:

UEB Online is the world’s first eLearning braille course. This award winning platform is designed to help people who can see support the people in their life that are using braille as a vital part of their communication. Learning Unified English Braille (UEB) code has never been easier with this accessible online platform. (https://www.ridbc.org.au/UEBOnline)

Sydney Launch of Cataract Kids Australia – June 6 – all welcome

Cataract Kids Australia is a new charity designed to improve support for children with cataracts and their families, to enhance clinical care and to build connections with research across Australia.  One of the organisation's main achievements in its first year is the release of a fantastic website www.cataractkids.org.au to provide clear and high-quality information about childhood cataract.  The site includes stories from Australian families about their cataract 'journey', links to a range of resources and support services, reliable information about cataracts and their treatment, and a list of recent research papers in the field.  

Cataract Kids Australia kicked off with an event in Melbourne in February and is now coming to Sydney!  On June 6, from 7 to 9pm, families, clinicians, researchers and anyone with an interest in childhood cataract can gather at the Renwick Centre in North Rocks to connect with each other and hear from a range of experts in the field.  There will be activities for children and light refreshments provided.  Registration is free and all are welcome.  Please visit the Cataract Kids website (www.cataractkids.org.au) and follow the links to register. 

You can also find Cataract Kids on social media: 

Facebook (@cataractkidsaustralia) Twitter (@CataractKidsAus) Instagram (https://www.instagram.com/cataractkidsaustralia/).  

For more information email Megan Prictor at info@cataractkids.org.au. 

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There are now over 800 complete registrations of children (43% girls and 57% boys), located in all states of Australia, aged 0-18 years of age on the ACVIR. This newsletter will provide you with an update on what is known in relation to their level of vision impairment, who detected the vision impairment initially, the 10 most common primary diagnoses and other key findings.

At the end of this newsletter is a copy of the ACVIR Inclusion Criteria, for your information.

Data from the register provides the following information about our children:

Families play an important role in detecting vision issues:

Health Professional45%

Child Health Nurse8%GP

3%

Family41%

School/other4%

Health ProfessionalChild Health NurseGPFamilySchool/other

We have found that in 41% of children with vision impairment their family members were the first to suspect their child may have an issue with their vision. Health professionals also are high on the list.

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Nine most common primary diagnoses:

Our children have many varied and complex eye conditions that cause their vision impairment. Here is a list of the nine top diagnoses associated with childhood vision impairment:

1 Retinal Dystrophy - 22%2 Cortical Visual Impairment (CVI) - 20%3 Oculocutaneous Albinism (OCA) - 15%4 Nystagmus - 12%5 Optic Nerve Hypoplasia (ONH) - 9%6 Cataract - 8%7 Refractive - 6%8 Coloboma - 4%9 Retinopathy of Prematurity (ROP) - 5%

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Our children have varying levels of vision impairment:

Where do our registered children live?

NSW 52%

VIC 15%

SA 15%

QLD 10%

NSWVICSAQLDWATASNTACT

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Accredited short courses in sensory disabilityRoyal Institute for Deaf and Blind Children (RIDBC) Renwick Centre offers a large range of professionally accredited and affordable short courses for those who support children in areas of blindness/low vision, deafness/hard of hearing, autism and mental health.

Courses available online or face to face.

Find out more, contact: Carla Silveira T: (02) 9872 0207 E: carla.silveira@ridbc.org.au

To view short courses available and to enrol visit: bit.ly/cpesuite

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Albinism

What is Albinism?Albinism is an inherited condition where the body is unable to produce normal amounts of melanin. There are different types of albinism:

Oculocutaneous albinism: the eyes, hair and skin are affected

Ocular albinism: only the eyes are affected.

How is vision affected?Generally, vision is poorer when there is less melanin pigment in the iris and retina of an individual. Visual acuity can vary between individuals. Typically, central vision is reduced and an individual will still have good peripheral vision.

Eye conditions and symptoms commonly associated with albinism include:

Photophobia: the iris is usually pale and thin with gaps in it and the retina is pale. Pigment of an iris and retina will absorb light entering an eye. In an individual with albinism, light is not absorbed well, resulting in light sensitivity and blurry vision. Polarised sunglasses and broad brimmed hats reduce the effect of glare. Some individuals may require a specific percentage of tinting on their glasses to assist with glare indoors.

on retina. The fovea is the area of the retina responsible for fine detailed vision and colour differentiation. Foveal hypoplasia results in reduced sharpness of central vision and the ability to see fine detail.

Nystagmus: is a repetitive involuntary movement of the eyes. This constant movement of their eyes contributes to blurry vision. Individuals often have fluctuations in their vision throughout the day, especially when they are ill, stressed or fatigued. Many individuals with nystagmus will have a null point, a particular head and eye position where the best vision is obtained because the nystagmus eye movements are the smallest and slowest.

Refractive error: is caused by the shape of an individual’s eye. The shape of the eye causes light rays entering the eye to focus behind or in front of the retina. This also contributes to the blurry vision. Wearing glasses can help improve visual acuity. However, due to foveal hypoplasia and nystagmus, the visual acuity will still be reduced.

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Inclusion Criteria for the Research Project: The Australian Childhood Vision Impairment Register Version 1 Thursday 21st June,

2012.

ACVIR Inclusion CriteriaFor children to be included in the Australian Childhood Vision Impairment Register, they must be aged between 0-18 years and must have had their vision impairment diagnosed by an eye doctor or ophthalmologist.

Inclusion criteria mean the characteristics that your child needs to have to join the Register. There are different inclusion criteria - your child only needs one of these to qualify for the Register:

Inclusion Criteria 1: Visual AcuityIf your child has had their vision tested using both eyes, wearing their distance glasses or contact lenses (if needed), and they have a visual Acuity of 6/18 or less.

The arrow pointing on the vision chart shows the line of letters that equals 6/18. Your eye health professional may use a different type of vision test to this chart to work out your child’s visual acuity.

Inclusion Criteria 2: Visual FieldIf your child has had their visual field or peripheral vision tested using both eyes and they have 20 degrees of less of remaining visual field.

The picture demonstrates loss of visual field.

Inclusion Criteria 3: Cortical Vision ImpairmentIf your child has any form of cortical vision impairment.

Your eye health professional will be able to advise you if your child meets the inclusion criteria for the Australian Childhood Vision impairment Register. If you have any questions please contact Register staff on acvir@ridbc.org.au or call (02) 9872 0248.

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.

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Our supportersClick on a link to go directly to an organisation’s website:

http://www.visionaustralia.org/home

NSW/ACT https://www.guidedogs.com.au/

QLD https://www.guidedogsqld.com.au/

VIC https://www.guidedogsvictoria.com.au/

SA https://www.guidedogs.org.au/

WA https://www.guidedogswa.com.au/

TAS https://guidedogstas.com.au/

https://www.visability.com.au/

http://www.senses.asn.au/

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http://www.cando4kids.com.au/

http://www.ridbc.org.au/

https://www.cerebralpalsy.org.au/

https://www.downsyndrome.org.au/index.html

http://www.retinaaustralia.com.au/index.htm

http://www.mediaaccess.org.au/digitalaccessibilityservices/

http://albinismaustralia.org/

http://www.eyeplaysafe.org.au/index.htm

http://allabilitiesplayground.net.au/