READYorNot[TM] Brain-Based Disabilities Trial

Summary

The purpose of this study is to find out if there is a benefit to using the MyREADY Transition\[TM\] BBD App for brain-based disabilities, compared to not using it. To do this, some of the participants in this study will use the MyREADY Transition\[TM\] BBD App and others will not use the App. Everyone will continue to get the same care they have been getting (their usual care).

The study team wants to see how youth will use the MyREADY Transition\[TM\] BBD App as they are getting ready to leave the children's hospital or children's treatment centre. And, they want to see if it will help youth to be knowledgeable about their own health. The study team hopes to see youth taking steps to develop the skills so they become better managers of their health. For example, this would include knowing about their medication or knowing when to ask for help from parents/caregivers and health care providers.

Conditions

• Autism Spectrum Disorder
• Cerebral Palsy
• Epilepsy
• Fetal Alcohol Spectrum Disorders
• Spina Bifida

Interventions

OTHER

e-health application

In the first part of this study, an e-health application (MyREADY Transition\[TM\] BBD App) was developed, targeting the needs of youth with BBD during their transition and transfer from pediatric to adult health care. Program development centered on three core foci of health care transition planning: education, empowerment, and navigation. The intervention has an emphasis on the process of transition in which youth and young adults learn information and develop skills in order to eventually assume maximal responsibility for self-management of their conditions (e.g., learning how to speak directly with health providers) while also providing information to prepare youth for the event of the transfer from pediatric to adult health care.

Sponsors & Collaborators

• Canadian Institutes of Health Research (CIHR)

  collaborator OTHER_GOV

• McGill University Health Centre/Research Institute of the McGill University Health Centre

  collaborator OTHER

• The Montreal Children's Hospital Foundation

  collaborator UNKNOWN

• McMaster Children's Hospital Foundation

  collaborator UNKNOWN

• Hamilton Health Sciences Corporation

  collaborator OTHER

• New Brunswick Health Research Foundation

  collaborator OTHER

• The Hospital for Sick Children

  collaborator OTHER

• Harvard Medical School (HMS and HSDM)

  collaborator OTHER

• Oregon Health and Science University

  collaborator OTHER

• McMaster University

  lead OTHER

Principal Investigators

• Jan Willem Gorter, MD,PhD,FRCPC · McMaster University

• Ariane Marelli, MD,MPH,FRCPC · McGill University

• Adrienne Kovacs, PhD,CPsych · Oregon Health and Science University

Study Design

Allocation

RANDOMIZED

Purpose

HEALTH_SERVICES_RESEARCH

Masking

NONE

Model

PARALLEL

Eligibility

Min Age

15 Years

Max Age

17 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2020-06-22

Primary Completion

2023-05-22

Completion

2023-05-22

Countries

• Canada

Study Locations