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Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration Volume 24, 2023 - Issue 5-6
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Health Economics

The amyotrophic lateral sclerosis-health index (ALS-HI): development and evaluation of a novel outcome measure

Anika Varma1 Center for Health + Technology, Rochester, NY, USA
,
Jennifer Weinstein1 Center for Health + Technology, Rochester, NY, USA
,
Jamison Seabury1 Center for Health + Technology, Rochester, NY, USA
,
Spencer Rosero1 Center for Health + Technology, Rochester, NY, USA
,
Christine Zizzi1 Center for Health + Technology, Rochester, NY, USA
,
Danae Alexandrou1 Center for Health + Technology, Rochester, NY, USA
,
Ellen Wagner1 Center for Health + Technology, Rochester, NY, USA
,
Nuran Dilek2 Department of Neurology, University of Rochester, Rochester, NY, USA
,
John Heatwole3 Pittsford Sutherland High School, Pittsford, NY, USA
,
Joanne Wuu4 Department of Neurology, University of Miami Miller School of Medicine, Miami, FL, USA
,
James Caress5 Wake Forest Baptist Health, Winston-Salem, NC, USA
,
Richard Bedlack6 Department of Neurology, Duke University School of Medicine, Durham, NC, USA
,
Volkan Granit4 Department of Neurology, University of Miami Miller School of Medicine, Miami, FL, USA
,
Jeffrey Statland7 Department of Neurology, University of Kansas Medical Center, Kansas City, KS, USA
,
Paul Mehta8 Centers for Disease Control and Prevention National ALS Registry, Agency for Toxic Substances and Disease Registry, Atlanta, GA, USA, and
,
Michael Benatar4 Department of Neurology, University of Miami Miller School of Medicine, Miami, FL, USA
,
Aaron Kaat9 Northwestern Feinberg School of Medicine, Evanston, IL, USA
&
Chad Heatwole1 Center for Health + Technology, Rochester, NY, USA;2 Department of Neurology, University of Rochester, Rochester, NY, USACorrespondence[email protected]
 show all
Pages 514-522 | Received 27 Oct 2022, Accepted 12 Apr 2023, Published online: 15 May 2023

References

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  • Jenkinson C, Fitzpatrick R, Brennan C, Bromberg M, Swash M. Development and validation of a short measure of health status for individuals with amyotrophic lateral sclerosis/motor neurone disease: the ALSAQ-40. J Neurol. 1999;246 Suppl 3: III16–21.
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  • ALS Functional Rating Scale Revised (ALS-FRS-R). Accessed April 28, 2023 from mdcalc.com
  • Fournier CN, Bedlack R, Quinn C, Russell J, Beckwith D, Kaminski KH, et al. Development and validation of the Rasch-Built Overall Amyotrophic Lateral Sclerosis Disability Scale (ROADS). JAMA Neurol. 2020;77:480–8.

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