Qui nous sommes...
Le Groupe consultatif médical (MAG)est un comité ad hoc d'experts chargé d'examiner les questions liées à l'utilisation de l'aducanumab (AduhelmMT) par des personnes atteintes du syndrome de Down. Le MAG a été organisé suite à l'approbation par la FDA le 7 juillet 2021 du médicament de la société pharmaceutique Biogen, l'aducanumab, pour le traitement de la maladie d'Alzheimer.
Le comité ad hoc relève du comité des soins de santé cliniques du NTG, présidé par Seth Keller, MD et Kathryn Service, NPN-BC, en accord avec le comité consultatif scientifique du NTG, présidé par Lucille Esralew, Ph.D.
Les membres du groupe consultatif sont issus d'experts des États-Unis (et d'autres pays) dont le travail et la recherche auprès de personnes atteintes du syndrome de Down touchées par la démence touchent aux nombreuses facettes de la détection et du diagnostic précoces, ainsi que des interventions, des traitements et de la gestion de la santé. . Les membres sont également issus de la politique de santé, des prestataires et des membres de la famille engagés, dont les préoccupations sont les soins sociaux et les politiques publiques applicables et les pratiques de soutien.
Le MAG a récemment publié une déclaration de consensus sur l'aducanumab et les personnes atteintes du syndrome de Down, qui peut être consultée ci-dessous.
Voir aussi : Informations sur Aduhelm et le syndrome de Down
Publications et documents liés au 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.
Publications et documents liés au 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.