2023 American Academy of Neurology Abstract Website

Tomo Tarui¹, Charulata Venkatesan², Dawn Gano³, Monica Lemmon⁴, Sarah Mulkey⁵, Andrea Pardo⁶, Lisa Emrick⁷, Mark Scher⁸, Sonika Agarwal⁹
¹Floating Hospital for Children, Tufts Medical Center, ²Cincinnati Children'S Hospital Medical Center, ³UCSF Weill Institute for Neurosciences, ⁴Duke University School of Medicine, ⁵Neurology, Children's National, DC, ⁶Lurie Children's Hospital of Chicago, ⁷Texas Children's Hospital, ⁸University Hospitals of Cleveland, ⁹Children's Hospital of Philadelphia

Objective:

To study the fetal neurology care delivery across centers in the US.

Background:

Fetal neurology is a rapidly evolving subspecialty that centers on the diagnosis and treatment of neurologic conditions of the developing brain. Innovations in fetal diagnostic tools and therapies have resulted in an increased need for specialized training. Prenatal diagnostic input with postnatal continuity of care can better address sequelae including developmental, behavioral, epileptic and mental health disorders. Despite the growing need for fetal neurology services, little is known about the current practice.

Design/Methods:

The Fetal Neurology Consortium (representatives from 9 sites across the US) distributed a survey characterizing fetal neurologic care delivery to practicing child neurologists using a Redcap database posted to the Child Neurology Society member website in November 2021 and March 2022. The results were summarized using descriptive statistics.

Results:

Representatives from 43 US institutions responded. Most centers had a fetal diagnostic center (n=38/43, 88%), with about half using a fetal neurology registry. Most performed fetal ultrasound and MRI on site. The annual fetal consultations ranged between <20 for 40% to >100 for 17%. About 50% of respondents were subspecialty trained. Earliest gestational age of fetal MRI was 16-19 weeks in 30% and 20-23 weeks in 30%. 25% of respondents participated in interdisciplinary consultations. Majority of the respondents followed neurodevelopment clinically. 91% were interested in participating in a collaborative national registry. The top-five priorities ranked by respondents were clinical guidelines, long-term follow-up data, imaging, practice improvement and prenatal counseling technique.

Conclusions:

This survey highlights heterogeneity in fetal neurology practice, lack of standardization, and high demand for practice guidelines and education. Interdisciplinary collaborations will be crucial for relevant curriculum and program development, including increasing attention to healthcare disparities. This synergy among different disciplines will improve outcomes and may reduce the burden of neurological diseases with fetal origins across the lifespan.