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Research Engagement With People With Intellectual and Developmental Disabilities

NCT ID: NCT04182347

Last Updated: 2020-12-09

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Clinical Phase

NA

Total Enrollment

57 participants

Study Classification

INTERVENTIONAL

Study Start Date

2020-01-01

Study Completion Date

2020-10-31

Brief Summary

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The objectives of this project are to to build sustainable regional communities of Intellectual or Developmental Disabilities (IDD) stakeholders to provide ongoing input to research priorities, methodological processes, and relevant person-centered health outcomes; leverage existing Special Olympic infrastructure to nationally disseminate the toolkit in order to increase participation and engagement in research and improve health outcomes; conduct comparative effectiveness trials that incorporate people with IDD focusing on their research priorities.

Detailed Description

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This project will develop a skilled community of stakeholders through collaboration with Special Olympics to create capacity building working groups. Groups will collaborate to develop stakeholder training modules focused on leadership, research fundamentals, and health. Collaboratively developed trainings will be piloted to support revising of the Toolkit for the engagement of people with IDD in research. A range of stakeholders will be essential members of the team to design and provide critical feedback on the effectiveness of the Toolkit, research priorities, and ecologically valid methodologies. Finally, research priorities will be refined, and the research engagement Toolkit will be nationally disseminated to Special Olympics and relevant community organizations. The toolkit will include necessary training for people with IDD, as well as paid and unpaid caregivers to be engaged partners in research.

Conditions

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Intellectual Disability Developmental Disability Chronic Conditions, Multiple

Keywords

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Individuals with Intellectual or Developmental Disabilities Research ToolKit Health Disparities Engagement

Study Design

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Allocation Method

NA

Intervention Model

SINGLE_GROUP

A ToolKit will be created to support the engagement of people with IDD in the development of research. The toolkit will be the first of its kind to provide an accessible, structured process with the necessary training for people with IDD and people with IDD's paid and unpaid caregivers to be engaged partners. Learning activities are focused on leadership, information about research, health for individuals with IDD. Learning activities will include topics:

What is health research? What is the health research process? How can individuals with IDD be involved in health research? Where is research happening? How to think like a researcher. Creating health stories for research and care advocacy.

The learning activities will teach individuals with IDD information and allow participants to practice the learning.
Primary Study Purpose

HEALTH_SERVICES_RESEARCH

Blinding Strategy

NONE

Study Groups

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People with IDD and caregivers

Group Type OTHER

Health Research ToolKit Development

Intervention Type OTHER

The Toolkit will be an accessible, structured process for people with IDD and people with IDD's paid and unpaid caregivers to be engaged partners. Learning activities are focused on leadership, information about research, health for individuals with IDD. Learning activities will include topics:

What is health research? What is the health research process? How can individuals with IDD be involved in health research? Where is research happening? How to think like a researcher. Creating health stories for research and care advocacy.

The learning activities will teach individuals with IDD information and allow participants to practice the learning.

Interventions

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Health Research ToolKit Development

The Toolkit will be an accessible, structured process for people with IDD and people with IDD's paid and unpaid caregivers to be engaged partners. Learning activities are focused on leadership, information about research, health for individuals with IDD. Learning activities will include topics:

What is health research? What is the health research process? How can individuals with IDD be involved in health research? Where is research happening? How to think like a researcher. Creating health stories for research and care advocacy.

The learning activities will teach individuals with IDD information and allow participants to practice the learning.

Intervention Type OTHER

Other Intervention Names

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Learning Activities

Eligibility Criteria

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Inclusion Criteria

* Individuals with Intellectual or Developmental Disabilities (IDD)
* Caregiver or family member of the individual with IDD
* Patients/consumer
* Clinician
* Complete informed consent or assent

Exclusion Criteria

\-
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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University of Wisconsin, Madison

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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Waisman Center

Madison, Wisconsin, United States

Site Status

Countries

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United States

Other Identifiers

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A176000

Identifier Type: OTHER

Identifier Source: secondary_id

EDUC/KINESIOLOGY

Identifier Type: OTHER

Identifier Source: secondary_id

2018-1215

Identifier Type: -

Identifier Source: org_study_id