Evaluation of the Transitional & Lifelong Care Program

Status Recruiting

Clinical Trial Summary

The population cared for in the Transitional and Lifelong Care (TLC) clinic is youth and adults with childhood-onset disability, of which the large majority are adults with brain-based, neurodevelopmental conditions such as cerebral palsy, spina bifida and developmental disability. The TLC program was created to address the health inequities that have long existed for this population because of the gaps in care they experience once they transition from pediatric healthcare services to the adult healthcare sector. The TLC program offers coordinated and comprehensive management of co-occurring mental, social and physical health conditions for this group of adults with neurodiverse conditions. The proposed study will provide much needed evaluation of the TLC model as an intervention to provide transitional and lifelong care that reduces the barriers experienced because of the undefined clinic path - potentially more appropriately referred to as a "cliff" by a Freeman et al., (2015) - for these individuals. With appropriate evidence of effectiveness, scaling of the TLC program to other Ontario Health regions and more widely across Canada would improve access healthcare providers who are knowledgeable and competent in the management of physical and mental health conditions for adults with neurodiverse conditions as well as service integration and coordination between social and health sectors. The TLC clinic was co-designed with adults with neurodiverse conditions and health care providers in 2014 and represents a significant and sustainable change in the way healthcare has been delivered for this population in the Ontario Health West region over the last 7 years. More than 750 people have accessed coordinated and comprehensive care from Physiatrists, a Nurse Practitioner, Social Worker, Physiotherapist, Occupational Therapist, Speech Language Pathologist, Registered Dietitian and Rehabilitation Therapist in the TLC program since it began, documenting the effectiveness of this care has the power to re-shape care received for adults with neurodiverse conditions that onset in childhood in Canada.

Clinical Trial Description

n/a

Study Design

Related Conditions & MeSH terms

Clinical Trial Details

NCT number	NCT05849285
Study type	Observational
Source	Western University, Canada
Contact	Laura K Brunton, PhD
Phone	15196612111
Email	lbrunto3@uwo.ca
Status	Recruiting
Phase
Start date	January 3, 2024
Completion date	December 2027

View Details

See also
Status	Clinical Trial	Phase
Recruiting	`NCT05317234` - Genetic Predisposition in Cerebral Palsy	N/A
Recruiting	`NCT05576948` - Natural History of Cerebral Palsy Prospective Study
Completed	`NCT04119063` - Evaluating Wearable Robotic Assistance on Gait	Early Phase 1
Completed	`NCT03264339` - The Small Step Program - Early Intervention for Children With High Risk of Developing Cerebral Palsy	N/A
Completed	`NCT05551364` - Usability and Effectiveness of the ATLAS2030 Exoskeleton in Children With Cerebral Palsy	N/A
Completed	`NCT03902886` - Independent Walking Onset of Children With Cerebral Palsy
Recruiting	`NCT05571033` - Operant Conditioning of the Soleus Stretch Reflex in Adults With Cerebral Palsy	N/A
Not yet recruiting	`NCT04081675` - Compliance in Children With Cerebral Palsy Supplied With AFOs
Completed	`NCT02167022` - Intense Physiotherapies to Improve Function in Young Children With Cerebral Palsy	N/A
Completed	`NCT04012125` - The Effect of Flexible Thoracolumbar Brace on Scoliosis in Cerebral Palsy	N/A
Enrolling by invitation	`NCT05619211` - Piloting Movement-to-Music With Arm-based Sprint-Intensity Interval Training Among Children With Physical Disabilities	Phase 1
Completed	`NCT04489498` - Comparison of Somatometric Characteristics Between Cerebral Palsy and Normal Children, Cross-sectional, Multi Center Study
Completed	`NCT03677193` - Biofeedback-enhanced Interactive Computer-play for Youth With Cerebral Palsy	N/A
Recruiting	`NCT06450158` - Robot-assisted Training in Children With CP	N/A
Completed	`NCT04093180` - Intensive Neurorehabilitation for Cerebral Palsy	N/A
Completed	`NCT02909127` - The Pediatric Eating Assessment Tool
Not yet recruiting	`NCT06377982` - Human Umbilical Cord Blood Infusion in Patients With Cerebral Palsy	Phase 1
Not yet recruiting	`NCT06007885` - Examining Capacity Building of Youth With Physical Disabilities to Pursue Participation Following the PREP Intervention.	N/A
Not yet recruiting	`NCT03183427` - Corpus Callosum Size in Patients With Pineal Cyst	N/A
Active, not recruiting	`NCT03078621` - Bone Marrow-Derived Stem Cell Transplantation for the Treatment of Cerebral Palsy	Phase 1/Phase 2

Clinical trials are conducted in a series of steps, called phases - each phase is designed to answer a separate research question.

Phase 1: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.
Phase 2: The drug or treatment is given to a larger group of people to see if it is effective and to further evaluate its safety.
Phase 3: The drug or treatment is given to large groups of people to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely.
Phase 4: Studies are done after the drug or treatment has been marketed to gather information on the drug's effect in various populations and any side effects associated with long-term use.

Evaluation of the Transitional and Lifelong Care Program

Clinical Trial Summary

Clinical Trial Description

Study Design

Related Conditions & MeSH terms