MedDataX Logo

Partnering With Autistic Adults to Improve Healthcare

NCT ID: NCT01579669

Last Updated: 2015-12-07

Study Results

Results available

Outcome measurements, participant flow, baseline characteristics, and adverse events have been published for this study.

View full results

Basic Information

Get a concise snapshot of the trial, including recruitment status, study phase, enrollment targets, and key timeline milestones.

Recruitment Status

COMPLETED

Clinical Phase

NA

Total Enrollment

237 participants

Study Classification

INTERVENTIONAL

Study Start Date

2013-09-30

Study Completion Date

2014-08-31

Brief Summary

Review the sponsor-provided synopsis that highlights what the study is about and why it is being conducted.

The goal of this proposal is to develop and evaluate patient-centered care tools for autistic adults and their primary care providers (PCPs).

Detailed Description

Dive into the extended narrative that explains the scientific background, objectives, and procedures in greater depth.

The goal of this study is to develop and evaluate patient-centered care tools for autistic adults and their primary care providers (PCPs). One tool will allow autistic adults and/or their supporters to provide individualized information to PCPs about how being on the spectrum affects their healthcare and possible strategies to facilitate quality care. Another tool will capitalize on the power of patient narrative to educate PCPs about autism. These tools and other resources will be housed on an interactive website for autistic adults, supporters, and PCPs. The research team will evaluate the feasibility and acceptability of using the new web-based patient-centered care tools with autistic adults and their primary care providers. This study will provide data for a future trial testing the effectiveness of these tools in improving the health of autistic adults by increasing patient-centered care and patient activation.

Conditions

See the medical conditions and disease areas that this research is targeting or investigating.

Autism Spectrum Disorder

Study Design

Understand how the trial is structured, including allocation methods, masking strategies, primary purpose, and other design elements.

Allocation Method

NA

Intervention Model

SINGLE_GROUP

Primary Study Purpose

HEALTH_SERVICES_RESEARCH

Blinding Strategy

NONE

Study Groups

Review each arm or cohort in the study, along with the interventions and objectives associated with them.

Use of Toolkit

All participants will have access to the toolkit

Group Type EXPERIMENTAL

Use of toolkit

Intervention Type BEHAVIORAL

Patient participants will be given access to the toolkit and will create a customized report for their provider. Team will send report to providers and ask them to schedule appointment with patient to discuss.

Interventions

Learn about the drugs, procedures, or behavioral strategies being tested and how they are applied within this trial.

Use of toolkit

Patient participants will be given access to the toolkit and will create a customized report for their provider. Team will send report to providers and ask them to schedule appointment with patient to discuss.

Intervention Type BEHAVIORAL

Eligibility Criteria

Check the participation requirements, including inclusion and exclusion rules, age limits, and whether healthy volunteers are accepted.

Inclusion Criteria

* Medical diagnosis of autism spectrum disorder (including autistic disorder, Asperger's disorder, Childhood Disintegrative Disorder, and pervasive developmental disorder NOS)
* Understands written or spoken English or has a support person available who understands written or spoken English
* Has a primary care provider

Exclusion Criteria

* Is not a resident of the United States
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

Meet the organizations funding or collaborating on the study and learn about their roles.

National Institute of Mental Health (NIMH)

NIH

Sponsor Role collaborator

Syracuse University

OTHER

Sponsor Role collaborator

Indiana University

OTHER

Sponsor Role collaborator

Autistic Self Advocacy Network

UNKNOWN

Sponsor Role collaborator

Portland State University

OTHER

Sponsor Role collaborator

Oregon Health and Science University

OTHER

Sponsor Role lead

Responsible Party

Identify the individual or organization who holds primary responsibility for the study information submitted to regulators.

Christina M. Nicolaidis

Associate Professor

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

Learn about the lead researchers overseeing the trial and their institutional affiliations.

Christina Nicolaidis, MD, MPH

Role: PRINCIPAL_INVESTIGATOR

Oregon Health and Science University

Locations

Explore where the study is taking place and check the recruitment status at each participating site.

Oregon Health and Science University

Portland, Oregon, United States

Site Status

Countries

Review the countries where the study has at least one active or historical site.

United States

References

Explore related publications, articles, or registry entries linked to this study.

Nicolaidis C, Raymaker D, McDonald K, Kapp S, Weiner M, Ashkenazy E, Gerrity M, Kripke C, Platt L, Baggs A. The Development and Evaluation of an Online Healthcare Toolkit for Autistic Adults and their Primary Care Providers. J Gen Intern Med. 2016 Oct;31(10):1180-9. doi: 10.1007/s11606-016-3763-6. Epub 2016 Jun 6.

Reference Type DERIVED
PMID: 27271730 (View on PubMed)

Related Links

Access external resources that provide additional context or updates about the study.

http://aaspire.org/?p=projects&c=hctoolkit/

AASPIRE toolkit study information

Other Identifiers

Review additional registry numbers or institutional identifiers associated with this trial.

R34MH092503

Identifier Type: NIH

Identifier Source: secondary_id

View Link

R34MH092503

Identifier Type: NIH

Identifier Source: org_study_id

View Link