Download Childhood-onset Eye Disorders - Sight Loss and Vision Priority

The Sight Loss and Vision Priority Setting Partnership
FORM A: LONG LIST OF UNCERTAINTIES FOR CHILDHOOD-ONSET EYE DISORDERS
The uncertainties listed on this form have been gathered from a survey and consultation with people affected by sight loss, their
partners, relatives and carers and eye health professionals. The survey submissions relating to childhood-onset eye disorders
were checked and formatted into questions. Where there were duplicates, or very similar submissions, these were combined. The
questions below are defined as uncertain because they cannot be answered by an up-to-date systematic review of relevant
research evidence. You are being asked to choose and rank 10 of the uncertainties below. You may wish to choose 10 from a
single category or choose 10 from across a number of different categories. Please see Form B for instructions on this prioritisation
exercise.
There is a glossary of terms at the end of this document.
No.
Uncertainty
DETECTION, DIAGNOSIS & MONITORING
1
Can amblyopia be accurately tested for in children under 2 years old?
2
5
What is the best way to conduct screening of children to detect amblyopia?
Can an objective screening method be used nationally in children so that early diagnosis is obtained and treatment
can be started?
Is the Sbisa bar result a reliable way to determine a person's risk of developing intractable double vision during
patching?
Is it possible to identify what children with a visual impairment due to coloboma actually see?
6
What is the best way to identify sight loss in babies and young children?
7
8
What can be done to identify eye abnormalities before birth?
What is the life long prognosis for very premature babies with reduced quality of vision as measured using contrast
sensitivity tests?
CAUSE & PREVENTION
9
What can be done to prevent coloboma?
10
What are the causes of coloboma?
3
4
No.
Uncertainty
11
Is amblyopia hereditary?
12
What are the factors that influence the development of amblyopia?
13
Why do some people develop dense amblyopia and others much less severe amblyopia?
14
What is the cause of microphthalmia/anophthalmia?
15
Is there a link between the mutations in the RB1 gene and the way that retinoblastoma presents and develops?
16
Is it possible to determine genetic markers for retinoblastoma?
17
What is the cause of persistent hyperplastic primary vitreous (PHPV)?
18
How can cataract be prevented in children?
19
How can cerebral visual impairment be prevented in children?
20
What can be done to improve conception in terms of avoiding deformities after birth?
21
What is the relationship between birth/labour complications and later eyesight problems?
22
What is the relationship between length and thickness of eye lashes and fetal alcohol syndrome in children?
23
What is the relationship between meningitis and loss of sight in childhood?
24
What is the relationship between nutritional deficiency and eye and brain development in children?
25
What is the likelihood that visual development will take longer for children who have developmental delays?
26
What is the cause of colour blindness?
TREATMENT
27
Can vision be corrected in later life for people with amblyopia?
28
29
Is it safe to treat adults with untreated amblyopia using perceptual learning techniques?
Is it possible to determine which eyes are likely to benefit from occlusion therapy administered in patients with
different types of amblyopia?
30
Does the patient’s age / developmental stage affect the optimum amount of daily patching for amblyopia?
No.
Uncertainty
31
What is the most effective way to assess when amblyopia treatment must be stopped to prevent children from
developing adverse conditions such as intractable double vision?
Is there a link between poor diet and response to amblyopia therapy in children?
Do current treatment interventions for amblyopia assure better vision for patients than if no treatment is
administered?
When patching is stopped in people with amblyopia, what is the likelihood that vision will be maintained?
Where vision in an amblyopic eye is only reduced in a crowding test but not in a singles' test, is there any functional
benefit to the eye by treating it with patching?
What works best to motivate a child and his/her carers to comply with amblyopia treatment?
Can a drug be developed that is safe to use to reverse the effects and cure amblyopia instead of using patching or
atropine?
How useful is the Sbiza bar in the treatment of amblyopia compared with other methods?
Can we achieve full binocular vision for children with lazy eye if we treat the condition or does treatment only ever
partially restore vision?
Can the treatment of amblyopia be improved to produce better results than are possible with current treatments?
Are better results achieved for people with amblyopia if atropine is used as a first-line treatment compared with the
results achieved where it is not used as a first-line treatment?
Does the addition of oral medication produce better outcomes in the treatment of amblyopia than patching alone?
Is it possible to determine whether refractive keratoplasty can be used to treat childhood anisometropic amblyopia
rather than standard therapy?
What is the most effective way to treat amblyopia in children under the age of 7?
32
33
34
35
36
37
38
39
40
41
42
43
44
45
47
Do eye exercises lead to improved vision in people with amblyopia?
Is it possible to help restore vision in a lazy eye (amblyopia) by encouraging the brain to make the necessary
connections?
Can we use novel drugs or therapies in the treatment of aniridia?
48
Can a stem cell treatment be developed for conditions such as coloboma and aniridia?
49
Is it possible to develop a way of permanently treating coloboma?
46
No.
51
50
52
53
54
55
56
57
58
Uncertainty
With coloboma, is it possible for the eye to be repaired so that it appears to look normal, even if the vision is still
impaired?
Is there a role for gene therapy in the treatment of patients with the genetic (heritable) form of retinoblastoma?
Can a treatment be developed for persistent hyperplastic primary vitreous (PHPV)?
Does proton beam radiotherapy offer a safer and equally effective alternative to conventional radiotherapy in the
treatment of retinoblastoma, especially for children under 1 year of age?
Can the long term effects of radiotherapy for retinoblastoma be prevented?
Can alternative treatments for retinoblastoma other than radiotherapy be developed?
Is there any detrimental effect on visual acuity in the good eye, when patching is used to treat congenital cataract in
young babies?
Can intra-ocular lens implantation be used safely and effectively in children?
60
Can treatments for congenital cataract be improved?
How can the effects of visual impairment due to brain damage at birth be repaired through early intervention of
stem cell treatment?
Can better treatments for glaucoma in children be developed?
61
What are the benefits of visual impairment rehabilitation interventions for people with learning difficulties?
62
How can treatment for visual pathway damage associated with pre-term and full term birth be developed?
63
How do children with visual impairment respond to training with magnifiers?
64
Is it possible to recover binocular function in adults with squint and amblyopia?
65
Is there a place for inverse patching in the treatment of eccentric fixation in people with strabismus and amblyopia?
66
68
Can a treatment be developed to improve vision for people with albinism?
Are there any in-utero interventions that could alter the genetic condition of the foetus in a family where there is
known albinism?
Can a treatment for colour blindness be developed?
69
Are coloured glasses known to be of any use in the treatment of colour blindness?
59
67
Glossary of terms:
Atropine: A drug used in the treatment of lazy eye.
Binocular function: When both eyes are being used together.
Contrast sensitivity tests: A sensitivity test to measure the ability to distinguish between light versus dark.
Gene therapy: The introduction of genes into the body to treat disease.
Genetics: The science of heredity which attempts to understand inheritance factors.
Genetic markers: A gene code with a known sequence that can be used to identify individuals or species.
Intra-ocular lens: A lens implanted in the eye.
Patching: A treatment for amblyopia/lazy eye where the ‘good’ eye is covered to stimulate the other eye.
Proton beam radiotherapy: Radiotherapy delivered by using a high energy beam of protons rather than high energy X-rays.
Refractive keratoplasty: A generic term which includes all surgical procedures on the cornea to improve vision by changing the
curvature of the cornea.
Screening method: A test to check whether someone has a certain condition.
Sbisa bar: A test of the ‘depth of suppression’ which is the measure of awareness of objects within the field of vision.
Stem cells: Cells that have the potential to become any type of cell in the body.
Visual acuity: The clearness or acuteness of an individual’s vision.