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OpenTrials
Completed

NCT Number: NCT04182347

Research Engagement With People With Intellectual and Developmental Disabilities

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.

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Key information

Conditions

Intellectual Disability Chronic Conditions, Multiple Chronic Disease Developmental Disabilities Developmental Disability Disease Attributes Mental Disorders Multiple Chronic Conditions Nervous System Diseases Neurobehavioral Manifestations Neurodevelopmental Disorders Neurologic Manifestations Pathologic Processes Pathological Conditions, Signs and Symptoms Signs and Symptoms

Age range

18 year and older

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

Primary location

Waisman Center

Madison, Wisconsin, 53705, United States

About this study

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.

Who can participate

Healthy volunteers accepted: Yes

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

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

-

Treatment and study plan

Health Research ToolKit Development

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.

Other names: Learning Activities

Primary outcomes

  1. READI Curriculum Development

    Time frame: Up to one year

    The development of an online health research curriculum incorporating stakeholders as part of the development team.

  2. Health Research Infographic Development

    Time frame: Up to one year

    The development of health research infographics incorporating stakeholders as part of the development team that will bridge knowledge dissemination between researchers and people with IDD.

Sponsors and collaborators

Lead sponsor

University of Wisconsin, Madison

Other

Registry information

Official study title

Engagement in Healthy Communities for People With Intellectual and Developmental Disabilities

Acronym: PCORI

Important dates

Study start
2020
Primary completion
2020
Study completion
2020
First posted
Dec 2, 2019
Registry last updated
Dec 9, 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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