Bringing CNS Members Together to Make Children’s Lives Better

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Council for the East

Andrea Gropman, MD

Originally from Boston, I moved to the DMV after medical school to complete my training in pediatrics, neurology, and genetics, successfully lost my Boston accent, serve as Division Chief of Neurodevelopmental Disabilities and Neurogenetics at the Children’s National Hospital (past 10 years). I am Principal investigator of the Urea Cycle Disorders Consortium and serve as interim director of Genomics and Personalized medicine at the Children’s National Research Innovation Campus.

I obtained my medical degree at the University of Massachusetts Chan Medical School. I got hooked on child neurology after my mentor (Paul Marshall) sent me to work with Paul Rosman at NEMC. I then completed pediatrics at Johns Hopkins (Frank Oski), followed by child neurology at Children’s National (Roger Packer) and genetics training at NIH (Bill Gahl). During my fellowship at Children’s, I developed the first neurogenetics clinic when the most sophisticated test we had was karyotype!

After 11 years of training post medical school including clinical fellowships and a Howard Hughes Research fellowship, I was finally ready to become faculty! I joined Georgetown in 2000 Children’s National Hospital and the George Washington University School of Medicine in 2003. In 2013 I was promoted to professor with tenure.

I have had the privilege of committee work and leadership in national organizations. I served on the RRC for genetics as the inaugural trainee and remain active in the NIH genetics training program as well as the North American Metabolic Academy. I participated as an examiner for the ABPN oral boards and serve on several ABPN item writing committees. I serve an associate editor for Journal of Child Neurology, previously on the editorial board of Pediatric Neurology, and section editor for Swaiman’s Pediatric Neurology, and editor in chief for Mitochondrial Medicine. I have served on NIH grants review committees. I am deputy clinical director of the Mito EpiGen research collaborative and Director of the Clinical Translational Core of the Intellectual Disabilities and Developmental Disabilities Research Center at CNH. I served as the chair of the steering committee of the Rare Disease Clinical Research Network (RDCRN) that brings together more than 20 rare disease consortia.

In the CNS I served on the scientific selection committee, the legislative affairs committee, CNS foundation, and currently the awards committee, and of the neurogenetics SIG which has grown from an original audience of three, to 100s. I am cochair of the NG special interest group and vice chair of the Neurogenetics SIG for the AAN.

I maintain an active funded research portfolio while also serving as mentor for students, trainees, and faculty at all levels. My research interest focuses on understanding neurological injury in inborn errors of metabolism using multimodal neuroimaging and cell markers to better characterize and understand the underpinnings of neurological injury, their impact on complex cognitive functions and establishing neuromonitoring protocols that can be implemented universally in clinical settings.

Always looking for new challenges outside my comfort zone, I tried my hand at screen writing after attending a “screen writing for physicians” course.

What have been your most important or rewarding experiences in your years with CNS or with other professional organizations, and how have these experiences shaped your vision of the direction the CNS might take under your leadership?

My most important and rewarding experiences during my 23+ years in the CNS have been engaging with colleagues, researchers, and experts in the field, fostering collaborations, and building a network of professionals working towards a common goal through my work on committees and participation in posters and presentations. These interactions can provide valuable insights, exchange of ideas, and opportunities for collective growth and guide how the field will advance.

More recently I have found reward in mentoring younger professionals, students, and newcomers to the field. Supporting the growth and development of individuals by sharing expertise and experiences can be highly rewarding and contribute to the overall success of the future of the CNS. My work in advocacy and outreach through the CNS and other endeavors such as working with the NUCDF, UMDF and PRISMS has taught me the importance of CNS and its impact on society through public outreach, policy advocacy, and engagement with stakeholders. Working towards creating awareness and influencing decision-makers can shape the direction and priorities of the organization and attract trainees to our profession. How we train the future generation is important and I am working with colleagues to understand what tools the future workforce will need and how to address that during training.

These experiences can shape the future vision of CNS by emphasizing key areas such as collaboration, knowledge sharing, mentorship, and advocacy.

Under my leadership I would work with the CNS to foster interdisciplinary collaborations, encourage open-access research and data sharing, facilitate mentorship programs at all levels, and actively engage in public discourse to promote the understanding and relevance of child neurology and neuroscience in society, while fostering inclusivity and diversity, promoting ethical practices in research, embracing emerging technologies and methodologies, and addressing critical challenges in the field such as access, work force shortages, training the next generation of child neurologists and transition to adulthood.

Ultimately, I would strive to advance the field of neuroscience, promote its societal impact, and ensure the CNS remains at the forefront of scientific discovery and innovation. To do so, we need to continue to attract and recruit students and researchers to our field. It is important to plant the seed early in medical school.

Since neurologic disorders in children can have a significant psychosocial impact on both the affected child and their family, I would work with the CNS foundation and patient advocacy to address the emotional and behavioral issues, developmental delays, cognitive impairments, and the burden of ongoing care that can affect the mental well-being and quality of life for the child and their caregivers. Addressing these psychosocial aspects is an essential part of comprehensive child neurology care. Addressing these challenges requires ongoing research, collaboration, and the development of specialized resources and support systems for children with neurologic disorders. By advancing our understanding, improving access to care, and promoting multidisciplinary collaboration, we can enhance the outcomes and quality of life for children with neurologic conditions.

What are the most challenging issues facing child neurologists today, and how would the CNS, under your leadership, help its members meet those challenges?

Child neurology faces several challenges including workforce shortage, patient access, increased patient complexity and need for multidisciplinary care models, prior authorizations for genetics testing and expensive medications, and transition to adult neurology clinics, especially for those with Autism or IDD.

Child neurology is at an exciting crossroads and we as the leading organization for child neurologists, should decide how to define and prepare ourselves and future generations for these advances which may provide creative solutions for our stated challenges.

Pediatric neurology services may be concentrated in major medical centers creating challenges for children and families who live in remote or underserved regions. The pandemic opened our eyes to opportunities for the integration of digital health technologies, remote monitoring, and telemedicine platforms as ways to decrease the burden of research, but more importantly, to deliver equitable care and enhance access to care, especially for patients in remote areasOur role in telehealth is an ongoing discussion

Child neurology often requires a multidisciplinary approach, and the future may see increased collaboration among healthcare providers, including neurologists, geneticists, developmental pediatricians, psychologists, and therapists. Collaborative care models can lead to more holistic and comprehensive management of neurological conditions, addressing the medical, developmental, and psychosocial needs of children and their families. Health care as it is, does not have these models built into capitated care. Many pediatric neurologic disorders are chronic or lifelong conditions that require long-term management. Ensuring consistent access to care, monitoring disease progression, and addressing evolving needs as children grow and develop and require transition to adult services pose ongoing challenges

As our understanding of genetics and molecular mechanisms improves, child neurology is likely to benefit from more precise and personalized approaches to diagnosis and treatment. In order to have precision medicine, precision diagnosis is essential. Child neurologist must be comfortable ordering and interpreting genetic testing results and work closely with genetic counselors and geneticists. Child neurologists should be at the table in this arena to advocate for involvement of our specialty in decisions around precision medicine and engage with stakeholders on all fronts.

Neuroimaging techniques continue to evolve, providing greater insights into the structure and function of the developing brain, which may help in earlier diagnoses, treatment monitoring, and predicting long-term outcomes and may need to be part of clinical care.

New treatment modalities and interventions are emerging in child neurology. This includes the development of novel pharmacological agents, gene therapies, DNA and RNA based therapies, etc. These innovations hold the potential to improve outcomes and quality of life for children with neurological disorders. Child neurologists need training and comfort with these new drugs that may not just include oral agents and IVs, but complex delivery into the brain.

With the increasing availability big datasets and electronic health records, this presents an opportunity for child neurologists to collaborate on research, data sharing, and use this technology for the development of evidence-based guidelines. This collective effort may promote development of standardized practices, clinical decision-making support and accelerate scientific innovation and discoveries.