Detection of ASD at the 1st Birthday as Standard of Care: The Get SET Early Model
| Status: | Recruiting |
|---|---|
| Conditions: | Neurology, Psychiatric, Autism |
| Therapuetic Areas: | Neurology, Psychiatry / Psychology |
| Healthy: | No |
| Age Range: | Any |
| Updated: | 4/2/2016 |
| Start Date: | August 2014 |
| End Date: | June 2019 |
| Contact: | Mallory Barrett |
| Email: | mpiazzola@ucsd.edu |
| Phone: | 858-822-3613 |
According to a recent report from the Centers for Disease Control, most children with ASD do
not receive a diagnosis and begin receiving treatment until well after their 4th birthday,
which is unfortunate given that many connections between brain cells have already been
established by that age. This program will test a model called Get S.E.T. Early (S=Screen,
E=Evaluate, T=Treat) in both San Diego and Phoenix, designed to detect, evaluate, and treat
ASD within the first 2 years of life. In this proposal 7,500 toddlers from the general
population will be screened in San Diego and Phoenix (total 15,000) using the CSBS IT
Checklist (Wetherby & Prizant, 2002) at well baby check-ups using a "triple screen" approach
wherein toddlers are screened at three ages starting at 12 months. Investigators predict
that providing screening tools with clear cut-off scores and guidelines for automatic
referral for both evaluation and treatment will result in dramatically lowering mean age of
detection in Phoenix from 4-5 years down to 1-2 years. Investigators also predict that using
repeat screening at 12, 18, & 24 months in combination with automatic referral options via
technology (i-Pads) will result in an increase in the number of ASD toddlers detected by 24
months relative to a single time point screen using traditional paper screens.
not receive a diagnosis and begin receiving treatment until well after their 4th birthday,
which is unfortunate given that many connections between brain cells have already been
established by that age. This program will test a model called Get S.E.T. Early (S=Screen,
E=Evaluate, T=Treat) in both San Diego and Phoenix, designed to detect, evaluate, and treat
ASD within the first 2 years of life. In this proposal 7,500 toddlers from the general
population will be screened in San Diego and Phoenix (total 15,000) using the CSBS IT
Checklist (Wetherby & Prizant, 2002) at well baby check-ups using a "triple screen" approach
wherein toddlers are screened at three ages starting at 12 months. Investigators predict
that providing screening tools with clear cut-off scores and guidelines for automatic
referral for both evaluation and treatment will result in dramatically lowering mean age of
detection in Phoenix from 4-5 years down to 1-2 years. Investigators also predict that using
repeat screening at 12, 18, & 24 months in combination with automatic referral options via
technology (i-Pads) will result in an increase in the number of ASD toddlers detected by 24
months relative to a single time point screen using traditional paper screens.
Investigators previously demonstrated that their early intervention model system, which was
centered on using the CSBS IT Checklist to screen all babies at the 1-year check-up as
standard of care, resulted in a mean age of 12 months for screening, 14 months for
evaluation, and 18 months for treatment participation. These are far younger ages than is
common in the U.S. The 3-stage model system, Get SET (S=Screen; E=Evaluate; T=Treat) Early,
screened >10,000 1 year olds in the first trial run detecting over 100 ASD and other
developmental delayed toddlers. The current grant will build on this highly effective model
by implementing a new version in two major cities: San Diego and Phoenix; data mined from
electronic records from Kaiser pediatric offices in Los Angeles and Irvine will provide
control data. In Phoenix, investigators test the feasibility of establishing the Get SET
Early model in a city with one of the lowest median incomes and oldest age of first
diagnosis in America. In AIM #1, the Screen and Refer Early stage, investigators will create
a Pediatrician Network with 100 members in Phoenix. In San Diego investigators will utilize
their existing Pediatrician Network and test new innovations such as a repeat "triple
screen" at 12, 18, and 24 months to ensure that no toddlers are missed. Speed of referral
for evaluation will be compared and contrasted using parent (self) and automatic (referral
i-Pad App) options. Investigators will track every toddler with an eventual ASD diagnosis
within circumscribed medical groups to determine the true sensitivity and specificity of the
screening tool and the percentage of ASD toddlers detected by this model. Anonymous survey
data regarding screening habits will be administered to parents and pediatricians. AIM #2
implements the Evaluate and Refer Early stage. Its key attribute is an ASD Early Evaluation
Clinic that specializes in the rapid scheduling and evaluation of every referred screened
positive toddler. Toddlers will enter the program at the age they fail the screen (i.e., 12,
18 or 24 months) and will be thoroughly diagnostically evaluated and tracked once per year
until they turn 3 years. This specialty Clinic is at the Autism Center in San Diego and will
be developed at SARRC in Phoenix. Automated versus optional self-referral for treatment will
be tested and compared. AIM #3 implements the Treat Early stage. Its key attributes are a
network of providers of empirically based treatment and the innovative use of an inexpensive
and readily available web-based treatment tracking system to document engagement. Treatment
Networks will be created in San Diego and Phoenix. Primary outcome measures include rates
and ages of screening and referral, evaluation and referral, and treatment engagement;
sustainability across years; diagnostic, clinical and demographic characteristics of
subjects; professional and parent satisfaction at each stage. Investigators hypothesize that
providing screening tools with clear cut-off scores and guidelines for automatic referral
for evaluation and treatment, will result in dramatically lowering mean age of diagnosis and
treatment in Phoenix from 4-5 years down to 1-2 years; San Diego will likewise have mean
ages of 1-2 years for diagnosis and treatment making them significantly earlier than
non-intervention contrast cities.
centered on using the CSBS IT Checklist to screen all babies at the 1-year check-up as
standard of care, resulted in a mean age of 12 months for screening, 14 months for
evaluation, and 18 months for treatment participation. These are far younger ages than is
common in the U.S. The 3-stage model system, Get SET (S=Screen; E=Evaluate; T=Treat) Early,
screened >10,000 1 year olds in the first trial run detecting over 100 ASD and other
developmental delayed toddlers. The current grant will build on this highly effective model
by implementing a new version in two major cities: San Diego and Phoenix; data mined from
electronic records from Kaiser pediatric offices in Los Angeles and Irvine will provide
control data. In Phoenix, investigators test the feasibility of establishing the Get SET
Early model in a city with one of the lowest median incomes and oldest age of first
diagnosis in America. In AIM #1, the Screen and Refer Early stage, investigators will create
a Pediatrician Network with 100 members in Phoenix. In San Diego investigators will utilize
their existing Pediatrician Network and test new innovations such as a repeat "triple
screen" at 12, 18, and 24 months to ensure that no toddlers are missed. Speed of referral
for evaluation will be compared and contrasted using parent (self) and automatic (referral
i-Pad App) options. Investigators will track every toddler with an eventual ASD diagnosis
within circumscribed medical groups to determine the true sensitivity and specificity of the
screening tool and the percentage of ASD toddlers detected by this model. Anonymous survey
data regarding screening habits will be administered to parents and pediatricians. AIM #2
implements the Evaluate and Refer Early stage. Its key attribute is an ASD Early Evaluation
Clinic that specializes in the rapid scheduling and evaluation of every referred screened
positive toddler. Toddlers will enter the program at the age they fail the screen (i.e., 12,
18 or 24 months) and will be thoroughly diagnostically evaluated and tracked once per year
until they turn 3 years. This specialty Clinic is at the Autism Center in San Diego and will
be developed at SARRC in Phoenix. Automated versus optional self-referral for treatment will
be tested and compared. AIM #3 implements the Treat Early stage. Its key attributes are a
network of providers of empirically based treatment and the innovative use of an inexpensive
and readily available web-based treatment tracking system to document engagement. Treatment
Networks will be created in San Diego and Phoenix. Primary outcome measures include rates
and ages of screening and referral, evaluation and referral, and treatment engagement;
sustainability across years; diagnostic, clinical and demographic characteristics of
subjects; professional and parent satisfaction at each stage. Investigators hypothesize that
providing screening tools with clear cut-off scores and guidelines for automatic referral
for evaluation and treatment, will result in dramatically lowering mean age of diagnosis and
treatment in Phoenix from 4-5 years down to 1-2 years; San Diego will likewise have mean
ages of 1-2 years for diagnosis and treatment making them significantly earlier than
non-intervention contrast cities.
Inclusion Criteria:
- Completed CSBS IT Checklist at pediatrician office
- Pediatrician referred
- Between 12 and 36 months
Exclusion Criteria:
- Older than 36 months
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