A National Survey on the Neurogenetics Workforce: Practice Models, Evolving Challenges, and Future Directions

Area of Science:

• Neurogenetics
• Neurology
• Genomic Medicine

Background:

• Neurogeneticists diagnose and manage genetic disorders of the nervous system.
• Training pathways vary, including dual residencies and fellowships.
• Neurogenomics applications are expanding within neurology.

Purpose of the Study:

• Identify strategies for neurologists to effectively incorporate genetic testing.
• Improve patient outcomes through enhanced genetic testing integration.
• Assess current practices and educational needs in neurogenetics.

Main Methods:

• A survey of neurogeneticists across the United States was conducted.
• The survey assessed practice parameters, program development, and educational requirements.
• Data were collected anonymously via REDCap from 30 respondents.

Main Results:

• Most respondents were from academic institutions and engaged in research.
• Respondents commonly order and interpret genetic tests for various neurological conditions.
• Ninety percent utilize precision therapies, and 50% participate in clinical trials.

Conclusions:

• Neurogenetics expertise is in high demand for diagnosis and therapy.
• Barriers include staffing, training, and infrastructure for genetic testing integration.
• Integrating genetic counselors and genetics education in neurology residencies is vital for equitable care.