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El Grupo Asesor Médico (MAG)es un comité ad hoc de expertos encargado de examinar cuestiones relacionadas con el uso de aducanumab (AduhelmTM) por personas con síndrome de Down. El MAG se organizó luego de que la FDA aprobara el 7 de julio de 2021 el medicamento de la firma farmacéutica Biogen, aducanumab, para el tratamiento de la enfermedad de Alzheimer.
El comité ad hoc funciona bajo el Comité de Atención Médica Clínica de NTG, presidido por Seth Keller, MD y Kathryn Service, NPN-BC, de acuerdo con el Panel Consultivo Científico de NTG, presidido por Lucille Esralew, Ph.D.
Los miembros del Grupo Asesor provienen de expertos en los Estados Unidos (y otros países) cuyo trabajo e investigación con personas con síndrome de Down afectadas por demencia y toca las muchas facetas de la detección y el diagnóstico tempranos, y las intervenciones, los tratamientos y la gestión de la salud. . Los miembros también provienen de la política de salud, proveedores y familiares comprometidos, cuyas preocupaciones son la atención social y las políticas públicas aplicables y las prácticas de apoyo.
El MAG emitió recientemente una declaración de consenso sobre aducanumab y las personas con síndrome de Down, que se puede consultar a continuación.
Ver también: Información sobre Aduhelm y el síndrome de Down
Publicaciones y documentos relacionados con MAG
NTG MAG
Connections with the American Academy of Neurology
Dr. Seth M. Keller, the founder and past Chair of the Adults with Intellectual and Developmental Disabilities Section, is active with working with colleagues in the AAN to promote the interest among neurologists of issues facing adults with intellectual disabilities as they age and present with neuropathologies.
Such advocacy continues within the current leadership of the Section. The current Chair of the Section, Bhooma Aravamuthan, MD, DPhil, of the Washington University (in St. Louis) School of Medicine, recently advised the AAN of the Section's recommendation that the AAN consider programming on neurodevelopmental disabilities as an integral part of the AAN Annual Meeting offerings. Such programming might include:
1. A course on the lifelong manifestations of childhood onset neurologic conditions, and the importance of neurologist involvement across the lifespan.
2. Incorporation of childhood-onset conditions when discussing other topics (e.g. ensuring that Down syndrome is discussed explicitly when talking about Alzheimer’s disease).
3. A course on how to neurologically re-evaluate adults with childhood-onset conditions (e.g. many adults with neurodevelopmental disabilities have not had the genetic evaluations current guidelines mandate; others may have been misdiagnosed in childhood but still carry that label unquestioned throughout their lifespan).
Connections with the American Academy of Developmental Medicine and Dentistry
Dr. Seth M. Keller, a past-President of the AADMD, is also the NTG's Board representative to the Board of the AADMD. In this role he is the liaison to the experts within the AADMD and connects our two organizations on issues of common interest. This was evident during the COVID-19 pandemic when we collaborated on advisories on health issues related to the virus and its effects. AADMD members are also drawn upon to consult of orphan or unique conditions found to be present in adults with intellectual and developmental disabilities. The AADMD is also the MAG's key source of information on oral health issues.
Publicaciones y documentos relacionados con MAG
NTG's FAQ on aducanumab and Down syndrome
Resource document
A comprehensive FAQ issued by the NTG's Medical Advisory Group on questions that were raised about Biogen's new medication for treating Alzheimer's disease still has relevance even though Biogen has withdrawn Aduhelm from production. "We are glad to make this available to families and providers who have questions and concerns about the use of this new medication," said Dr. Seth Keller, the MAG leader.