Expanded Access for Rare Diseases @EverythingALS
Expanded Access for Rare Diseases  @EverythingALS
Uploaded February 2022 | Updated September 2026, 2 weeks ago
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Functional Medicine and Microbiome

Alison​ ​Bateman​-​House​, ​PhD​, ​MPH, MA​ ​is​ ​an​ ​Assistant​ ​Professor​ ​in​ ​the​ ​Division​ ​of​ ​Medical Ethics​ ​at​ ​NYU​ ​Grossman​ ​School​ ​of​ ​Medicine​ and a Professor of Practice in Law at University of Arizona James E. Rogers College of Law. ​She​ ​is​ ​co​-​chair, with Arthur Caplan PhD,​ ​of​ ​the​ ​Working​ ​Group​ ​on Compassionate​ ​Use​ ​and​ ​Preapproval​ ​Access​ (​CUPA​), ​an​ ​academic group​ ​that​ ​studies​ ​ethical issues concerning access​ ​to​ ​investigational​ ​medical products​ ​and which consists of patient advocates, clinicians, members of industry, current and former FDA staffers, lawyers, and academics, among others. Dr Bateman-House also co-chairs, with Lesha Shah MD, the Pediatric Gene Therapy and Medical Ethics (PGTME) working group, which includes academics, patient advocates, biopharmaceutical industry representatives, and a wide array of clinical and research professionals.

Dr. Bateman-House advises a wide array of biopharmaceutical companies, patient advocacy organizations, governmental and non-governmental entities about clinical trial design and non-trial access programs, and she serves as ethicist for multiple data safety monitoring boards overseeing clinical trials. Dr. Bateman​-​House​ also serves​ ​as​ ​the non-voting chair​ ​of​ ​the​ ​NYU​/​Janssen Pharmaceutical Compassionate​ ​Use​ ​Advisory​ ​Committees​ (​CompACs) for​ ​Infectious​ ​Diseases and​ ​Neurology/Psychology​. CompAC won the Reagan-Udall Foundation for the FDA’s 2019 Innovation Award. She has published and spoken extensively on non-trial access to investigational drugs, ​on​ ​clinical​ ​trial​ ​accessibility​, on​ ​the​ ​history​ ​and ethics​ ​of​ ​using​ ​humans​ ​as​ ​research​ ​subjects​, and on public health ethics.


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Expanded Access for Rare Diseases

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