Person-Centered Assessment and Monitoring Systems
| Status: | Active, not recruiting |
|---|---|
| Conditions: | Neurology, Autism |
| Therapuetic Areas: | Neurology, Psychiatry / Psychology |
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 3/15/2019 |
| Start Date: | July 2016 |
| End Date: | February 2020 |
Person-Centered Assessment and Monitoring Systems (PCAMS)
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.
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.
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.
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.
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
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