With rapid advances in genetic testing and its routine use in the medical evaluation of children with a neurodevelopmental disorder (including autism spectrum disorder, intellectual disability, and global developmental delay), an increasing number of children and adults are being diagnosed with genetic causes for their NDD, with up to 25% of children being diagnosed with a genetic condition. There is a tremendous gap in the counseling and care of patients with neurogenetic syndromes, and families are left with questions about the implications of the genetic diagnosis and confusion around next steps in care. To fill these gaps, we developed a clinical program through the UCLA Center for Autism Research and Treatment (CART) called the UCLA Care and Research in Neurogenetics (CARING) Clinic, which brings together genetics, neurology, psychiatry, and psychology to evaluate and treat patients with genetic conditions associated with NDDs. Since 2015, we have evaluated over 200 patients, identifying further gaps in care, including intervention, school-based services, pharmacotherapy and advocacy.
CARING evaluates and treats children and adults with suspected or identified genetic etiologies for their NDDs, with the goal of building a platform for clinical trials. The CARING clinic also directly integrates with research studies in neurogenetics at CART, with families given opportunities to participate in several ongoing studies on biomarkers, clinical characterization and treatment.
For more information about the clinic:
Please contact Careese Stephens, coordinator
Email: [email protected]
Telephone number: 310-206-7404