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OpenTrials
Completed

NCT Number: NCT03019978

Person-Centered Assessment and Monitoring Systems

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.

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Key information

Age range

18 year and older

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

Primary location

The Penn State College of Medicine

Hershey, Pennsylvania, 17033, United States

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

PCAMS assessments

Other

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.

Primary outcomes

  1. Social Responsiveness Scale- 2

    Time frame: annually over 2 years

  2. Adult Behavior Checklist

    Time frame: annually over 2 years

  3. Additional PROMIS measures

    Time frame: quarterly over 2 years

    Patient-Reported Outcomes Measurement Information System

  4. Community Engagement measure

    Time frame: semi-annually over 2 years

Secondary outcomes

  1. PROMIS measures

    Time frame: quarterly over 2 years

    Patient-Reported Outcomes Measurement Information System

  2. Elected Reporter Community Engagement measure

    Time frame: semi-annually over 2 years

Sponsors and collaborators

Lead sponsor

Milton S. Hershey Medical Center

Other

Collaborators

  • Pennsylvania Bureau of Autism Services

Registry information

Official study title

Person-Centered Assessment and Monitoring Systems (PCAMS)

Acronym: PCAMS

Important dates

Study start
2016
Primary completion
2019
Study completion
2019
First posted
Jan 13, 2017
Registry last updated
Apr 8, 2020

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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