Person-Centered Assessment and Monitoring Systems

Study Overview
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Brief Summary
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The proposed study will include an analysis of data for residents of Pennsylvania who are age 21 and older, have a diagnosis of Autism Spectrum Disorder (ASD), and are enrolled in the Commonwealth's Adult Community Autism Program (ACAP). The individuals enrolled in the program will be administered a standardized assessment battery quarterly for two years. The proposed study will analyze the data gathered during each of the assessment periods in order to aid in service/treatment planning, assess for individual improvements, and ultimately measure treatment outcomes.

Detailed Description
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The proposed study seeks to more closely monitor the changing needs and challenges of adults with ASD, which will be facilitated through a battery of assessments given over quarterly time points in a two year time period. Investigators seek to address whether increased frequency of behaviorally driven assessments will inform treatment. More specifically, investigators are interested in knowing if the assessment data influences treatment planning with providers or if it is guiding any decisions about treatment once data is returned to participants in a meaningful way which is easily understood. If data prompts treatment changes, the study will examine whether improvements are being shown months or even years later. An elected reporter, a family member, is asked to take part in the research study with the participant. An elected reporter is asked to complete several questionnaires quarterly, both reporting on themself and the participant.

Official Title
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Person-Centered Assessment and Monitoring Systems (PCAMS)

Conditions
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Autism Spectrum Disorder

Intervention / Treatment
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* Other: PCAMS assessments


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Enrolled in Pennsylvania's Adult Community Autism Program (ACAP), > 18 years of age English as primary language spoken Ability to self-report (i.e. understand and answer assessment questions written at a third grade comprehension level) Have an Elected Reporter Exclusion Criteria: -Inability to provide consent

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Design Details

Primary Purpose: Health Services Research
Intervention Model: Single Group Assignment
Masking: None (Open Label)


Arms and Interventions

| Intervention/Treatment |
| --- |
|Other: PCAMS assessments|This is a longitudinal study, where data will be collected from 54 individuals who are already enrolled in Pennsylvania's ACAP program. Participants will be required to complete online assessments at baseline and then quarterly over a two-year time period.|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Social Responsiveness Scale- 2 |  | annually over 2 years | 
| Adult Behavior Checklist |  | annually over 2 years | 
| Additional PROMIS measures | Patient-Reported Outcomes Measurement Information System | quarterly over 2 years | 
| Community Engagement measure |  | semi-annually over 2 years | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| PROMIS measures | Patient-Reported Outcomes Measurement Information System | quarterly over 2 years | 
| Elected Reporter Community Engagement measure |  | semi-annually over 2 years |