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January 25, 2022; 98 (4) Special Article

Decisions With Patients and Families Regarding Aducanumab in Alzheimer Disease, With Recommendations for Consent

AAN Position Statement

View ORCID ProfileWinston Chiong, View ORCID ProfileBenjamin David Tolchin, View ORCID ProfileRichard J. Bonnie, View ORCID ProfileKatharina M. Busl, Salvador Cruz-Flores, View ORCID ProfileLeon G. Epstein, Ericka P. Greene, View ORCID ProfileJudy Illes, View ORCID ProfileMatthew Kirschen, Daniel G. Larriviere, View ORCID ProfileSneha Mantri, Michael A. Rubin, Barney J. Stern, View ORCID ProfileLynne P. Taylor, on behalf of the Ethics, Law, and Humanities Committee (a joint committee of the AAN, ANA, and CNS)
First published November 17, 2021, DOI: https://doi.org/10.1212/WNL.0000000000013053
Winston Chiong
From the Department of Neurology (W.C.), University of California San Francisco; Department of Neurology (B.D.T.), Yale School of Medicine, New Haven, CT; School of Law (R.J.B.), University of Virginia, Charlottesville; Departments of Neurology and Neurosurgery (K.M.B.), University of Florida, Gainesville; Department of Neurology (S.C.-F.), Paul L. Foster School of Medicine, Texas Tech University Health Sciences Center, El Paso; Departments of Neurology and Pediatrics (L.G.E.), Northwestern University Feinberg School of Medicine, Chicago, IL; Department of Neurology (E.P.G.), Houston Methodist Hospital, TX; Neuroethics Canada and Division of Neurology (J.I.), University of British Columbia, Vancouver, Canada; Departments of Anesthesia & Critical Care, Pediatrics, and Neurology (M.K.), Children's Hospital of Philadelphia, Pennsylvania; Neuroscience Service Line, Inova Health System (D.G.L.), Falls Church, VA; Department of Neurology (S.M.), Duke University, Durham, NC; Departments of Neurology and Neurological Surgery (M.A.R.), University of Texas Southwestern Medical Center, Dallas; Department of Neurology (B.J.S.), Johns Hopkins University, Baltimore, MD; and Departments of Neurology and Neurosurgery (L.P.T.), University of Washington, Seattle.
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Benjamin David Tolchin
From the Department of Neurology (W.C.), University of California San Francisco; Department of Neurology (B.D.T.), Yale School of Medicine, New Haven, CT; School of Law (R.J.B.), University of Virginia, Charlottesville; Departments of Neurology and Neurosurgery (K.M.B.), University of Florida, Gainesville; Department of Neurology (S.C.-F.), Paul L. Foster School of Medicine, Texas Tech University Health Sciences Center, El Paso; Departments of Neurology and Pediatrics (L.G.E.), Northwestern University Feinberg School of Medicine, Chicago, IL; Department of Neurology (E.P.G.), Houston Methodist Hospital, TX; Neuroethics Canada and Division of Neurology (J.I.), University of British Columbia, Vancouver, Canada; Departments of Anesthesia & Critical Care, Pediatrics, and Neurology (M.K.), Children's Hospital of Philadelphia, Pennsylvania; Neuroscience Service Line, Inova Health System (D.G.L.), Falls Church, VA; Department of Neurology (S.M.), Duke University, Durham, NC; Departments of Neurology and Neurological Surgery (M.A.R.), University of Texas Southwestern Medical Center, Dallas; Department of Neurology (B.J.S.), Johns Hopkins University, Baltimore, MD; and Departments of Neurology and Neurosurgery (L.P.T.), University of Washington, Seattle.
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Richard J. Bonnie
From the Department of Neurology (W.C.), University of California San Francisco; Department of Neurology (B.D.T.), Yale School of Medicine, New Haven, CT; School of Law (R.J.B.), University of Virginia, Charlottesville; Departments of Neurology and Neurosurgery (K.M.B.), University of Florida, Gainesville; Department of Neurology (S.C.-F.), Paul L. Foster School of Medicine, Texas Tech University Health Sciences Center, El Paso; Departments of Neurology and Pediatrics (L.G.E.), Northwestern University Feinberg School of Medicine, Chicago, IL; Department of Neurology (E.P.G.), Houston Methodist Hospital, TX; Neuroethics Canada and Division of Neurology (J.I.), University of British Columbia, Vancouver, Canada; Departments of Anesthesia & Critical Care, Pediatrics, and Neurology (M.K.), Children's Hospital of Philadelphia, Pennsylvania; Neuroscience Service Line, Inova Health System (D.G.L.), Falls Church, VA; Department of Neurology (S.M.), Duke University, Durham, NC; Departments of Neurology and Neurological Surgery (M.A.R.), University of Texas Southwestern Medical Center, Dallas; Department of Neurology (B.J.S.), Johns Hopkins University, Baltimore, MD; and Departments of Neurology and Neurosurgery (L.P.T.), University of Washington, Seattle.
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Katharina M. Busl
From the Department of Neurology (W.C.), University of California San Francisco; Department of Neurology (B.D.T.), Yale School of Medicine, New Haven, CT; School of Law (R.J.B.), University of Virginia, Charlottesville; Departments of Neurology and Neurosurgery (K.M.B.), University of Florida, Gainesville; Department of Neurology (S.C.-F.), Paul L. Foster School of Medicine, Texas Tech University Health Sciences Center, El Paso; Departments of Neurology and Pediatrics (L.G.E.), Northwestern University Feinberg School of Medicine, Chicago, IL; Department of Neurology (E.P.G.), Houston Methodist Hospital, TX; Neuroethics Canada and Division of Neurology (J.I.), University of British Columbia, Vancouver, Canada; Departments of Anesthesia & Critical Care, Pediatrics, and Neurology (M.K.), Children's Hospital of Philadelphia, Pennsylvania; Neuroscience Service Line, Inova Health System (D.G.L.), Falls Church, VA; Department of Neurology (S.M.), Duke University, Durham, NC; Departments of Neurology and Neurological Surgery (M.A.R.), University of Texas Southwestern Medical Center, Dallas; Department of Neurology (B.J.S.), Johns Hopkins University, Baltimore, MD; and Departments of Neurology and Neurosurgery (L.P.T.), University of Washington, Seattle.
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  • ORCID record for Katharina M. Busl
Salvador Cruz-Flores
From the Department of Neurology (W.C.), University of California San Francisco; Department of Neurology (B.D.T.), Yale School of Medicine, New Haven, CT; School of Law (R.J.B.), University of Virginia, Charlottesville; Departments of Neurology and Neurosurgery (K.M.B.), University of Florida, Gainesville; Department of Neurology (S.C.-F.), Paul L. Foster School of Medicine, Texas Tech University Health Sciences Center, El Paso; Departments of Neurology and Pediatrics (L.G.E.), Northwestern University Feinberg School of Medicine, Chicago, IL; Department of Neurology (E.P.G.), Houston Methodist Hospital, TX; Neuroethics Canada and Division of Neurology (J.I.), University of British Columbia, Vancouver, Canada; Departments of Anesthesia & Critical Care, Pediatrics, and Neurology (M.K.), Children's Hospital of Philadelphia, Pennsylvania; Neuroscience Service Line, Inova Health System (D.G.L.), Falls Church, VA; Department of Neurology (S.M.), Duke University, Durham, NC; Departments of Neurology and Neurological Surgery (M.A.R.), University of Texas Southwestern Medical Center, Dallas; Department of Neurology (B.J.S.), Johns Hopkins University, Baltimore, MD; and Departments of Neurology and Neurosurgery (L.P.T.), University of Washington, Seattle.
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Leon G. Epstein
From the Department of Neurology (W.C.), University of California San Francisco; Department of Neurology (B.D.T.), Yale School of Medicine, New Haven, CT; School of Law (R.J.B.), University of Virginia, Charlottesville; Departments of Neurology and Neurosurgery (K.M.B.), University of Florida, Gainesville; Department of Neurology (S.C.-F.), Paul L. Foster School of Medicine, Texas Tech University Health Sciences Center, El Paso; Departments of Neurology and Pediatrics (L.G.E.), Northwestern University Feinberg School of Medicine, Chicago, IL; Department of Neurology (E.P.G.), Houston Methodist Hospital, TX; Neuroethics Canada and Division of Neurology (J.I.), University of British Columbia, Vancouver, Canada; Departments of Anesthesia & Critical Care, Pediatrics, and Neurology (M.K.), Children's Hospital of Philadelphia, Pennsylvania; Neuroscience Service Line, Inova Health System (D.G.L.), Falls Church, VA; Department of Neurology (S.M.), Duke University, Durham, NC; Departments of Neurology and Neurological Surgery (M.A.R.), University of Texas Southwestern Medical Center, Dallas; Department of Neurology (B.J.S.), Johns Hopkins University, Baltimore, MD; and Departments of Neurology and Neurosurgery (L.P.T.), University of Washington, Seattle.
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Ericka P. Greene
From the Department of Neurology (W.C.), University of California San Francisco; Department of Neurology (B.D.T.), Yale School of Medicine, New Haven, CT; School of Law (R.J.B.), University of Virginia, Charlottesville; Departments of Neurology and Neurosurgery (K.M.B.), University of Florida, Gainesville; Department of Neurology (S.C.-F.), Paul L. Foster School of Medicine, Texas Tech University Health Sciences Center, El Paso; Departments of Neurology and Pediatrics (L.G.E.), Northwestern University Feinberg School of Medicine, Chicago, IL; Department of Neurology (E.P.G.), Houston Methodist Hospital, TX; Neuroethics Canada and Division of Neurology (J.I.), University of British Columbia, Vancouver, Canada; Departments of Anesthesia & Critical Care, Pediatrics, and Neurology (M.K.), Children's Hospital of Philadelphia, Pennsylvania; Neuroscience Service Line, Inova Health System (D.G.L.), Falls Church, VA; Department of Neurology (S.M.), Duke University, Durham, NC; Departments of Neurology and Neurological Surgery (M.A.R.), University of Texas Southwestern Medical Center, Dallas; Department of Neurology (B.J.S.), Johns Hopkins University, Baltimore, MD; and Departments of Neurology and Neurosurgery (L.P.T.), University of Washington, Seattle.
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Judy Illes
From the Department of Neurology (W.C.), University of California San Francisco; Department of Neurology (B.D.T.), Yale School of Medicine, New Haven, CT; School of Law (R.J.B.), University of Virginia, Charlottesville; Departments of Neurology and Neurosurgery (K.M.B.), University of Florida, Gainesville; Department of Neurology (S.C.-F.), Paul L. Foster School of Medicine, Texas Tech University Health Sciences Center, El Paso; Departments of Neurology and Pediatrics (L.G.E.), Northwestern University Feinberg School of Medicine, Chicago, IL; Department of Neurology (E.P.G.), Houston Methodist Hospital, TX; Neuroethics Canada and Division of Neurology (J.I.), University of British Columbia, Vancouver, Canada; Departments of Anesthesia & Critical Care, Pediatrics, and Neurology (M.K.), Children's Hospital of Philadelphia, Pennsylvania; Neuroscience Service Line, Inova Health System (D.G.L.), Falls Church, VA; Department of Neurology (S.M.), Duke University, Durham, NC; Departments of Neurology and Neurological Surgery (M.A.R.), University of Texas Southwestern Medical Center, Dallas; Department of Neurology (B.J.S.), Johns Hopkins University, Baltimore, MD; and Departments of Neurology and Neurosurgery (L.P.T.), University of Washington, Seattle.
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Matthew Kirschen
From the Department of Neurology (W.C.), University of California San Francisco; Department of Neurology (B.D.T.), Yale School of Medicine, New Haven, CT; School of Law (R.J.B.), University of Virginia, Charlottesville; Departments of Neurology and Neurosurgery (K.M.B.), University of Florida, Gainesville; Department of Neurology (S.C.-F.), Paul L. Foster School of Medicine, Texas Tech University Health Sciences Center, El Paso; Departments of Neurology and Pediatrics (L.G.E.), Northwestern University Feinberg School of Medicine, Chicago, IL; Department of Neurology (E.P.G.), Houston Methodist Hospital, TX; Neuroethics Canada and Division of Neurology (J.I.), University of British Columbia, Vancouver, Canada; Departments of Anesthesia & Critical Care, Pediatrics, and Neurology (M.K.), Children's Hospital of Philadelphia, Pennsylvania; Neuroscience Service Line, Inova Health System (D.G.L.), Falls Church, VA; Department of Neurology (S.M.), Duke University, Durham, NC; Departments of Neurology and Neurological Surgery (M.A.R.), University of Texas Southwestern Medical Center, Dallas; Department of Neurology (B.J.S.), Johns Hopkins University, Baltimore, MD; and Departments of Neurology and Neurosurgery (L.P.T.), University of Washington, Seattle.
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Daniel G. Larriviere
From the Department of Neurology (W.C.), University of California San Francisco; Department of Neurology (B.D.T.), Yale School of Medicine, New Haven, CT; School of Law (R.J.B.), University of Virginia, Charlottesville; Departments of Neurology and Neurosurgery (K.M.B.), University of Florida, Gainesville; Department of Neurology (S.C.-F.), Paul L. Foster School of Medicine, Texas Tech University Health Sciences Center, El Paso; Departments of Neurology and Pediatrics (L.G.E.), Northwestern University Feinberg School of Medicine, Chicago, IL; Department of Neurology (E.P.G.), Houston Methodist Hospital, TX; Neuroethics Canada and Division of Neurology (J.I.), University of British Columbia, Vancouver, Canada; Departments of Anesthesia & Critical Care, Pediatrics, and Neurology (M.K.), Children's Hospital of Philadelphia, Pennsylvania; Neuroscience Service Line, Inova Health System (D.G.L.), Falls Church, VA; Department of Neurology (S.M.), Duke University, Durham, NC; Departments of Neurology and Neurological Surgery (M.A.R.), University of Texas Southwestern Medical Center, Dallas; Department of Neurology (B.J.S.), Johns Hopkins University, Baltimore, MD; and Departments of Neurology and Neurosurgery (L.P.T.), University of Washington, Seattle.
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Sneha Mantri
From the Department of Neurology (W.C.), University of California San Francisco; Department of Neurology (B.D.T.), Yale School of Medicine, New Haven, CT; School of Law (R.J.B.), University of Virginia, Charlottesville; Departments of Neurology and Neurosurgery (K.M.B.), University of Florida, Gainesville; Department of Neurology (S.C.-F.), Paul L. Foster School of Medicine, Texas Tech University Health Sciences Center, El Paso; Departments of Neurology and Pediatrics (L.G.E.), Northwestern University Feinberg School of Medicine, Chicago, IL; Department of Neurology (E.P.G.), Houston Methodist Hospital, TX; Neuroethics Canada and Division of Neurology (J.I.), University of British Columbia, Vancouver, Canada; Departments of Anesthesia & Critical Care, Pediatrics, and Neurology (M.K.), Children's Hospital of Philadelphia, Pennsylvania; Neuroscience Service Line, Inova Health System (D.G.L.), Falls Church, VA; Department of Neurology (S.M.), Duke University, Durham, NC; Departments of Neurology and Neurological Surgery (M.A.R.), University of Texas Southwestern Medical Center, Dallas; Department of Neurology (B.J.S.), Johns Hopkins University, Baltimore, MD; and Departments of Neurology and Neurosurgery (L.P.T.), University of Washington, Seattle.
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Michael A. Rubin
From the Department of Neurology (W.C.), University of California San Francisco; Department of Neurology (B.D.T.), Yale School of Medicine, New Haven, CT; School of Law (R.J.B.), University of Virginia, Charlottesville; Departments of Neurology and Neurosurgery (K.M.B.), University of Florida, Gainesville; Department of Neurology (S.C.-F.), Paul L. Foster School of Medicine, Texas Tech University Health Sciences Center, El Paso; Departments of Neurology and Pediatrics (L.G.E.), Northwestern University Feinberg School of Medicine, Chicago, IL; Department of Neurology (E.P.G.), Houston Methodist Hospital, TX; Neuroethics Canada and Division of Neurology (J.I.), University of British Columbia, Vancouver, Canada; Departments of Anesthesia & Critical Care, Pediatrics, and Neurology (M.K.), Children's Hospital of Philadelphia, Pennsylvania; Neuroscience Service Line, Inova Health System (D.G.L.), Falls Church, VA; Department of Neurology (S.M.), Duke University, Durham, NC; Departments of Neurology and Neurological Surgery (M.A.R.), University of Texas Southwestern Medical Center, Dallas; Department of Neurology (B.J.S.), Johns Hopkins University, Baltimore, MD; and Departments of Neurology and Neurosurgery (L.P.T.), University of Washington, Seattle.
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Barney J. Stern
From the Department of Neurology (W.C.), University of California San Francisco; Department of Neurology (B.D.T.), Yale School of Medicine, New Haven, CT; School of Law (R.J.B.), University of Virginia, Charlottesville; Departments of Neurology and Neurosurgery (K.M.B.), University of Florida, Gainesville; Department of Neurology (S.C.-F.), Paul L. Foster School of Medicine, Texas Tech University Health Sciences Center, El Paso; Departments of Neurology and Pediatrics (L.G.E.), Northwestern University Feinberg School of Medicine, Chicago, IL; Department of Neurology (E.P.G.), Houston Methodist Hospital, TX; Neuroethics Canada and Division of Neurology (J.I.), University of British Columbia, Vancouver, Canada; Departments of Anesthesia & Critical Care, Pediatrics, and Neurology (M.K.), Children's Hospital of Philadelphia, Pennsylvania; Neuroscience Service Line, Inova Health System (D.G.L.), Falls Church, VA; Department of Neurology (S.M.), Duke University, Durham, NC; Departments of Neurology and Neurological Surgery (M.A.R.), University of Texas Southwestern Medical Center, Dallas; Department of Neurology (B.J.S.), Johns Hopkins University, Baltimore, MD; and Departments of Neurology and Neurosurgery (L.P.T.), University of Washington, Seattle.
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Lynne P. Taylor
From the Department of Neurology (W.C.), University of California San Francisco; Department of Neurology (B.D.T.), Yale School of Medicine, New Haven, CT; School of Law (R.J.B.), University of Virginia, Charlottesville; Departments of Neurology and Neurosurgery (K.M.B.), University of Florida, Gainesville; Department of Neurology (S.C.-F.), Paul L. Foster School of Medicine, Texas Tech University Health Sciences Center, El Paso; Departments of Neurology and Pediatrics (L.G.E.), Northwestern University Feinberg School of Medicine, Chicago, IL; Department of Neurology (E.P.G.), Houston Methodist Hospital, TX; Neuroethics Canada and Division of Neurology (J.I.), University of British Columbia, Vancouver, Canada; Departments of Anesthesia & Critical Care, Pediatrics, and Neurology (M.K.), Children's Hospital of Philadelphia, Pennsylvania; Neuroscience Service Line, Inova Health System (D.G.L.), Falls Church, VA; Department of Neurology (S.M.), Duke University, Durham, NC; Departments of Neurology and Neurological Surgery (M.A.R.), University of Texas Southwestern Medical Center, Dallas; Department of Neurology (B.J.S.), Johns Hopkins University, Baltimore, MD; and Departments of Neurology and Neurosurgery (L.P.T.), University of Washington, Seattle.
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From the Department of Neurology (W.C.), University of California San Francisco; Department of Neurology (B.D.T.), Yale School of Medicine, New Haven, CT; School of Law (R.J.B.), University of Virginia, Charlottesville; Departments of Neurology and Neurosurgery (K.M.B.), University of Florida, Gainesville; Department of Neurology (S.C.-F.), Paul L. Foster School of Medicine, Texas Tech University Health Sciences Center, El Paso; Departments of Neurology and Pediatrics (L.G.E.), Northwestern University Feinberg School of Medicine, Chicago, IL; Department of Neurology (E.P.G.), Houston Methodist Hospital, TX; Neuroethics Canada and Division of Neurology (J.I.), University of British Columbia, Vancouver, Canada; Departments of Anesthesia & Critical Care, Pediatrics, and Neurology (M.K.), Children's Hospital of Philadelphia, Pennsylvania; Neuroscience Service Line, Inova Health System (D.G.L.), Falls Church, VA; Department of Neurology (S.M.), Duke University, Durham, NC; Departments of Neurology and Neurological Surgery (M.A.R.), University of Texas Southwestern Medical Center, Dallas; Department of Neurology (B.J.S.), Johns Hopkins University, Baltimore, MD; and Departments of Neurology and Neurosurgery (L.P.T.), University of Washington, Seattle.
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Decisions With Patients and Families Regarding Aducanumab in Alzheimer Disease, With Recommendations for Consent
AAN Position Statement
Winston Chiong, Benjamin David Tolchin, Richard J. Bonnie, Katharina M. Busl, Salvador Cruz-Flores, Leon G. Epstein, Ericka P. Greene, Judy Illes, Matthew Kirschen, Daniel G. Larriviere, Sneha Mantri, Michael A. Rubin, Barney J. Stern, Lynne P. Taylor, on behalf of the Ethics, Law, and Humanities Committee (a joint committee of the AAN, ANA, and CNS)
Neurology Jan 2022, 98 (4) 154-159; DOI: 10.1212/WNL.0000000000013053

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Alzheimer disease (AD) is a feared and stigmatized condition, with relentlessly progressive impact not only on the independence and health of people with dementia, but also on the health and financial well-being of their families, and the overall health care system and society. Further research towards effective treatment for AD is urgently needed, and patients with AD deserve more support from clinicians and from their communities. One essential condition of this support is trust. Whereas it is important to offer hope to patients and families, these efforts will ring hollow if trust is lost. Neurologists and others who serve patients and the broader public health must continually ask: Are the statements and actions of our profession worthy of the trust placed in us by patients and the public?

Footnotes

  • Go to Neurology.org/N for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article.

  • Approved by the Ethics, Law, and Humanities Committee, a joint committee of the American Academy of Neurology (AAN), American Neurological Association (ANA), and Child Neurology Society (CNS), on July 23, 2021. Approved by the AAN on August 19, 2021; the ANA on September 22, 2021; and the CNS on November 1, 2021.

  • Podcast: NPub.org/Podcast9804

  • Received August 20, 2021.
  • Accepted in final form November 2, 2021.
  • © 2021 American Academy of Neurology
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Disputes & Debates: Rapid online correspondence

  • Reader Response: Decisions With Patients and Families Regarding Aducanumab in Alzheimer Disease, With Recommendations for Consent: AAN Position Statement
    • Robert E. Becker, Psychiatry, clinical pharmacology,, Aristeas Translational Medicine Corporation
    Submitted November 23, 2021
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