Research Engagement With People With Intellectual and Developmental Disabilities

NCT04182347 | Completed

• 3 other identifiers: 2018-1215A176000EDUC/KINESIOLOGY
• Study Type: interventional
• Target: 57
• Locations: 1 country
• Sites: 1

Brief Summary

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.

Conditions

Intellectual Disability; Developmental Disability; Chronic Conditions, Multiple

Keywords

Individuals with Intellectual or Developmental Disabilities; Research; ToolKit; Health Disparities; Engagement

Outcome Measures

Primary Outcomes (2)

• READI Curriculum Development

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

  Up to one year

• Health Research Infographic Development

  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.

  Up to one year

Study Arms (1)

People with IDD and caregivers

OTHER

Other: Health Research ToolKit Development

Interventions

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.

Also known as: Learning Activities

People with IDD and caregivers

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

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

Sponsors & Collaborators

• University of Wisconsin, Madison: lead

Study Sites (1)

Waisman Center

Madison, Wisconsin, 53705, United States

Location

MeSH Terms

Conditions

Intellectual Disability; Developmental Disabilities; Multiple Chronic Conditions

Condition Hierarchy (Ancestors)

Neurobehavioral Manifestations; Neurologic Manifestations; Nervous System Diseases; Signs and Symptoms; Pathological Conditions, Signs and Symptoms; Neurodevelopmental Disorders; Mental Disorders; Chronic Disease; Disease Attributes; Pathologic Processes

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: HEALTH SERVICES RESEARCH
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Model Details: 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.

Study Record Dates

• First Submitted: October 22, 2019
• First Posted: December 2, 2019
• Study Start: January 1, 2020
• Primary Completion: October 31, 2020
• Study Completion: October 31, 2020
• Last Updated: December 9, 2020

Record last verified: 2020-12

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)