Model Registry
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Transcript Model Registry
Babies Count
The National Registry
for Children With
Visual Impairments,
Birth to 3 years
Deborah Hatton, Ph.D.
University of North Carolina
Burt Boyer, M.A.
American Printing House for the Blind
February 25, 2005
Preliminary Data Analysis: Do not share without
permission of authors
Model Registry of Early Childhood Visual
Impairment Collaborative Group, 1995-2000
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Tanni Anthony
Diana Bramow
Gail Calvello
Kay Ferrell
J Greeley
Patrika Griego
Deborah Hatton
Creig Hoyt
James Jan
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Mary Nelle McLennan
Tom Miller
Dennak Murphy
Marianne Riggio
Lee Robinson
Joyce Nesker Simmons
Julie Smith
Chris Tompkins
Hatton, D.D., & Model Registry of Early Childhood Visual Impairment
Collaborative Group. (2001). Model Registry of Early Childhood Visual
Impairment: First year results. Journal of Visual Impairment &
Blindness, 95 (7), 418-433.
Purpose of National Registry
• Prevalence of visual impairment (VI) in children was
not collected in a systematic or consistent manner
• Lack of data for children between Birth – 36 months
• Incidence rates of VI, as well as specific visual
diagnoses, have important implications for:
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Program development
Evaluation
Personnel preparation
In-service training, and
Funding
Impact of Project
• Establishes a centralized registry of children with
visual impairments, birth to three.
• Provides a database to more clearly define the
population.
• Allows for development of outcome research and
stimulate studies by other professionals (e.g.,
education, medical, sociological).
• Assists personnel preparation programs to be more
responsive to the needs of the field based upon
numbers of children who are blind or VI, changing
etiologies and geographical distribution of children.
Impact of Project, Continued
• Assists with program development; assessment/evaluation;
pre-service/in-service training; advocacy by professionals,
parents, organizations; and validates funding for additional
related programming.
• Provides APH with database to identify early trends in
etiologies and demographics which will help give data and
direction to APH for future research and product/materials
development.
• Provides a natural transition from the centralized registry for
children with VI, birth to three, to the Federal Quota
Program.
Mission of Project
• To maintain a national registry of young
children, ages birth to 36 months, by working
with public and private agencies to collect
standardized epidemiological and
demographic data on young children with
visual impairments.
• To insure that all data are coded to assure
confidentiality of children and families.
Referral Sources
N = 2,155
Data collected from 1/1/00 through 12/31/04
State
Utah
California
Arizona
MA
Colorado
NC
New Mexico
Illinois
Ohio
N
389
377
260
245
222
137
122
97
49
%
18.1
17.5
12.1
11.4
10.3
6.4
5.7
4.5
2.3
State
W Virginia
Arizona
Maryland
Kentucky
Vermont
Missouri
Iowa
MS
Other
Total
N
45
44
38
31
23
18
16
14
28
2,155
%
2.1
2
1.8
1.4
1.1
.8
.7
.7
1.3
Present Status of Referral Sources
• Surveys now collected from 29 states (initially
17)
• 4,200 children are presently registered
• August 2007 article release by Dr. Paul J.
Rychwalski and Dr. Debra Hatton in the Journal
of the American Association for Pediatric
Ophthalmology and Strabimus (JAAPOS)
• Next data analysis is due January/February 2008
Demographics
N = 2,155
Gender
Family Status
22%
Female
45%
Male
54%
Two
Parent
Family
78%
Ethnicity
N=2,155
5%
1%
4%
Euro-American n = 1254
4%
8%
Hispanic n = 510
African-Am n = 168
58%
24%
Asian n = 91
Other Minorities n = 108
Missing n = 24
Primary Language
N=2,155
6%
15%
English n=1679
78%
Spanish n=322
Other n=127
Children’s Ages (Months)
Mean (SD)
Referral
Youngest
Oldest
(7.4)
Birth
35.6
11.1 (7.6)
Birth
36.6
4.9
Birth
38.9
9.9
n = 2,154
Entry
n = 2,155
Diagnosis
n = 1,979
(5.4)
Mothers’ Characteristics
Age
Average (SD)
27.3 years (6.5)
Youngest
13 years
Oldest
48 years
Number
%
Graduate school
176
8%
Bachelor’s degree
361
17%
Some college
602
28%
High School
501
23%
< High School
303
14%
212
10%
Education
Missing
Visual Conditions N = 2,152
CVI n = 380
ROP n = 349
CVI
24%
Other
21%
ONH n = 208
Albinism n = 107
ROP
16%
Unknown
10%
Cataracts
3%
Structural n = 117
Retinal n = 118
Retinal
5%
ONH
Albinism
10%
5%
Struct 5%
Cataracts n = 73
Unknown n = 212
Other n = 459
Amount of Vision
N =2,155
Legally Blind
n = 862
Unknown
36%
NOT
Legally
Blind
24%
Legally
Blind
40%
NOT Legally
Blind
n = 516
Unknown
n = 777
Multiple Disability Risk Status
N = 2,155
VI Only n = 694
32%
48%
VI/DD n = 437
20%
VI/MD n = 1024
Visual Conditions:
Six Most Prevalent in Sample
N =1,943
90.2% of Sample (2,155)
CVI n=509
Number of children
600
500
400
300
200
100
0
26%
ROP n=349
18%
ONH n=208
11%
6%
6% 5.5%
Retinal n=118
Structural n=117
Albinism n=107
Age and Visual Condition
Mean Age in Months
N = 1,943
Diagnosis Referral
CVI
Entry
7.0 (6.1)
11.5 (7.6) 12.6 (7.8)
2.7 (3.3)
9.6 (6.7) 10.8 (6.9)
4.7 (4.8)
8.3 (7.0)
9.7 (7.3)
3.1 (2.9)
7.9 (6.4)
8.9 (6.8)
n = 509
ROP
n = 349
ONH
n = 208
Albinism
n = 107
Age and Visual Condition
Mean Age in Months
N = 1,943
Structural
Disorders
Diagnosis Referral
Entry
1.5 (2.9)
6.1 (6.7) 7.0 (6.8)
5.3 (4.9)
9.5 (6.7) 10.6 (6.8)
5.3 (6.0)
10.5 (7.8) 11.6 (7.8)
n =117
Retinal
Disorders
n = 118
Other
n = 535
Amount of Vision and Visual Condition
N = 1,943
CVI
Legally
Blind (LB)
Not
LB
Unknown/
Missing
214
42% 99
19% 196
39%
147
42% 76
22% 126
36%
133
64% 22
11% 53
26%
36% 29
27% 40
37%
n = 509
ROP
n = 349
ONH
n = 208
Albinism 38
n = 107
Amount of Vision and Visual Condition
N = 1,943
Legally
Blind (LB)
Structural 60
Disorders
Not
LB
Unknown/
Missing
51% 20
17% 37
32%
49% 26
22% 34
29%
n = 117
Retinal
58
Disorders
n = 118
Other
n = 535
164
31% 186 35% 185 35%
“Other” Visual Conditions
30%
Number of children
700
600
500
19.5%
16%
400
300
200
100
0
9.5%
9.5%
2%
1%
Nystagmus
n=652
Strabismus
n=421
Refractive Errors
n=347
Field Restrictions
n=205
Amblyopia
n=205
Ptosis
n=50
Enucleation
n=15
Disabling Conditions
N = 2,155
Number of children
1200
50%
1000
800
600
400
200
0
20%
16%
14%
9%
Syndrome
n=441
Brain Trauma
n=341
Cerebral Palsy
n=303
Developmental Delay
n=1086
Hearing Impairment
n=195
Disabling Conditions
and Visual Conditions
CVI
N =1,943
DD
CP
HI
SYN
Brain
n = 969 n = 284 n = 186 n = 399 n=306
35%
61%
24%
21%
67%
ROP
48%
13%
16%
1%
3%
ONH
8%
5%
9%
5%
6%
Albinism
1%
0%
2%
0%
1%
Retinal Disorders
4%
2%
6%
15%
2%
Structural Disorders
4%
0%
16%
OTHER
29%
19%
28%
12%
46%
1%
21%
Multiple Disability Risk Status and
Visual Condition
N = 1,943
VI Only
CVI
VI/DD
VI/MD
63
12% 75
15% 371 73%
153
44% 127 36% 69
20%
109
52% 43
27%
n= 509
ROP
n = 349
ONH
n = 208
21% 56
Multiple Disability Risk Status and
Visual Condition
N = 1,943
VI Only
93 87%
VI/DD
9 8%
VI/MD
5 5%
Albinism
n= 107
Structural 51 44%
7 6% 59 50%
Disorders
n= 117
Retinal
34 29% 12 10% 72 61%
Disorders
n= 118
Other
130 24% 107 20% 298 56%
n= 535
Number of Children
Health Conditions
500
450
400
350
300
250
200
150
100
50
0
21%
21%
Seizures
n = 465
15%
15%
14%
Seiz
Feed
Ortho
Resp
Tech
Feeding
Problems
n = 446
Orthopedic
Impairment
n = 321
Respiratory
Problems
n = 319
Technology
Dependent
n = 296
Visual Condition and
Health Conditions
N = 1,943
Seizures Respiratory Feeding Technology Orthopedic
Problems Problems Dependent Impairment
CVI
215 42%
76
15%
158 31%
2 2%
142 28%
30
116
33%
81 23%
65 19%
29 8%
n= 509
ROP
9%
n= 349
ONH
32 15%
24 12%
32 15%
12
6%
20 10%
3
6
6
2
2%
0
n= 208
Albinis
m
n= 107
3%
6%
6%
0%
Visual Condition and Health Conditions
N = 1,943
Seizures
Structural
Disorders
n= 117
Retinal
Disorders
n= 118
Other
n= 535
Respiratory
Problems
Feeding
Problems
Technology
Dependent
Orthopedic
Impairment
6
5%
16
14%
28
24%
21
18%
10
9%
19
16%
14
12%
19
16%
9
8%
11
9%
64 12%
78
15%
90 17%
52 10%
84 16%
Amount of Vision
N =2,155
Legally Blind
n = 862
Unknown
36%
NOT
Legally
Blind
24%
Legally
Blind
40%
NOT Legally
Blind
n = 516
Unknown
n = 777
Determining Visual Acuity
6%
9%
1%
Preferential Looking,
Medical Personnel
3% Preferential Looking,
Service Provider
Observation
17%
65%
Other
Unknown
VEP
Corrective and Prosthetic Devices
N = 2,155
Yes
No
Glasses
437 (20%)
1,718 (80%)
Contacts
44 (2%)
2,111 (98%)
Prostheses
45 (2%)
2,110 (98%)
Prevalent Visual Behaviors
Number of children
44%
1000
900
800
700
600
500
400
300
200
100
0
Inconsistent Visual
Function n=944
Eccentric Viewing
n=543
25%
Light Gazing
n=432
20%
Photophobia
n=405
19% 17%
15%
8%
Res Objects
n=359
Gaze Aversion
n=326
Head Shaking
n=167
Functional Vision: Awareness
Proportion who are visually AWARE of
Lights
Objects
CVI
91%
74%
ROP
ONH
91%
78%
77%
59%
Albinism
99%
94%
Structural
Disorders
83%
66%
Retinal
Disorders
92%
80%
OTHER
96%
87%
Functional Vision: Attention
Proportion who visually ATTEND to
Lights
Objects
CVI
76%
60%
ROP
75%
66%
ONH
64%
47%
Albinism
94%
91%
Structural
Disorders
Retinal
Disorders
OTHER
62%
56%
81%
71%
88%
80%
Functional Vision: Following
Proportion who visually FOLLOW
Lights
Objects
CVI
ROP
ONH
51%
61%
47%
46%
56%
40%
Albinism
89%
87%
Structural
Disorders
Retinal
Disorders
OTHER
51%
47%
70%
63%
76%
69%
no
w
n
65
U
nk
lf
110
Se
200
812
er
400
931
O
th
Pr
og
M
ed
ra
ic
m
al
Pr
ov
id
Pu
er
bl
ic
A
ge
nc
Fa
y
m
ily
/F
rie
nd
EI
Number of Children
Referral Sources
N = 2,155
1000
800
600
193
33
11
0
Service Description
Direct VI Services
Consultative VI Services
1,777 (82%)
470 (22%)
Service Providers
Certified VI Teacher
938 (60%)
Orientation/Mobility
Specialist
153 (10%)
Non-Certified VI Specialist
169 (11%)
Early Interventionist
140 (9%)
Other
438 (27%)
Early Intervention:
Location of Services
N = 2,155
Home
Specialized
Early Inter. Center
Day Care
Family Day Care
Hospital
Residential
2% 1%
8%
1%
0%
14%
86%