Shortening the Diagnostic Odyssey in Children with Neurologic Conditions

Organizer: Child Neurology Foundation Scott L. Pomeroy, MD, PhD; Harvard Medical School, Boston Children’s Hospital, Boston, Massachusetts, USA

Course Description:
This four-hour symposium will bring together medical professionals, families and advocates from around the world to discuss ways to shorten the diagnostic odyssey in children with neurologic conditions. On average, it takes five years to diagnose a rare disease. This is frustrating for both family and healthcare providers as it is critical, and sometimes lifesaving, to get to a diagnosis and begin making informed decisions about next steps in care for the child. During this session, participants will receive an overview of the current perspective, of families and professionals, on the challenges of getting to a diagnosis. The symposium will include speakers who share information on both low-tech and high-tech tools to accelerate the diagnostic journey. Participants will discuss the available tests and screens as well as how to best access and utilize these tools. We will also share information on best collaborate with families during the diagnostic process.

Learning Objectives

1. Identify the different types of tools available for diagnosing children with neurologic differences.
2. Identify the key elements of collaborating with families and mobilizing energy to use resources effectively.

Impact Statements

1. Developing a more effective protocol to utilize the appropriate tests and screeners for children in search of a diagnosis.
2. Improving communication and collaboration with families to shorten the diagnostic journey.