Utility of the global CDR® plus NACC FTLD rating and development of scoring rules: Data from the ARTFL/LEFFTDS Consortium

Toji Miyagawa; Danielle Brushaber; Jeremy Syrjanen; Walter Kremers; Julie Fields; Leah K. Forsberg; Hilary W. Heuer; David Knopman; John Kornak; Adam Boxer; Howard J. Rosen; Bradley F. Boeve; Brian Appleby; Yvette Bordelon; Jessica Bove; Patrick Brannelly; Christina Caso; Giovanni Coppola; Reilly Dever; Christina Dheel; Bradford Dickerson; Susan Dickinson; Sophia Dominguez; Kimiko Domoto-Reilly; Kelley Faber; Jessica Ferrell; Ann Fishman; Jamie Fong; Tatiana Foroud; Ralitza Gavrilova; Debra Gearhart; Behnaz Ghazanfari; Nupur Ghoshal; Jill S. Goldman; Jonathan Graff-Radford; Neill Graff-Radford; Ian Grant; Murray Grossman; Dana Haley; Robin Hsiung; Edward Huey; David Irwin; David Jones; Lynne Jones; Kejal Kantarci; Anna Karydas; Daniel Kaufer; Diana Kerwin; Ruth Kraft; Joel Kramer; Walter Kukull; Irene Litvan; Diane Lucente; Codrin Lungu; Ian Mackenzie; Miranda Maldonado; Masood Manoochehri; Scott McGinnis; Emily McKinley; Mario F. Mendez; Bruce Miller; Namita Multani; Chiadi Onyike; Jaya Padmanabhan; Alexander Pantelyat; Rodney Pearlman; Leonard Petrucelli; Madeline Potter; Rosa Rademakers; Eliana M. Ramos; Kate Rankin; Katya Rascovsky; Erik D. Roberson; Emily Rogalski; Pheth Sengdy; Leslie Shaw; Maria C. Tartaglia; Nadine Tatton; Joanne Taylor; Arthur Toga; John Q. Trojanowski; Ping Wang; Sandra Weintraub; Bonnie Wong; Zbigniew Wszolek

doi:10.1002/alz.12033

Utility of the global CDR^® plus NACC FTLD rating and development of scoring rules: Data from the ARTFL/LEFFTDS Consortium

Toji Miyagawa, Danielle Brushaber, Jeremy Syrjanen, Walter Kremers, Julie Fields, Leah K. Forsberg, Hilary W. Heuer, David Knopman, John Kornak, Adam Boxer, Howard J. Rosen, Bradley F. Boeve^*, Brian Appleby, Yvette Bordelon, Jessica Bove, Patrick Brannelly, Christina Caso, Giovanni Coppola, Reilly Dever, Christina DheelBradford Dickerson, Susan Dickinson, Sophia Dominguez, Kimiko Domoto-Reilly, Kelley Faber, Jessica Ferrell, Ann Fishman, Jamie Fong, Tatiana Foroud, Ralitza Gavrilova, Debra Gearhart, Behnaz Ghazanfari, Nupur Ghoshal, Jill S. Goldman, Jonathan Graff-Radford, Neill Graff-Radford, Ian Grant, Murray Grossman, Dana Haley, Robin Hsiung, Edward Huey, David Irwin, David Jones, Lynne Jones, Kejal Kantarci, Anna Karydas, Daniel Kaufer, Diana Kerwin, Ruth Kraft, Joel Kramer, Walter Kukull, Irene Litvan, Diane Lucente, Codrin Lungu, Ian Mackenzie, Miranda Maldonado, Masood Manoochehri, Scott McGinnis, Emily McKinley, Mario F. Mendez, Bruce Miller, Namita Multani, Chiadi Onyike, Jaya Padmanabhan, Alexander Pantelyat, Rodney Pearlman, Leonard Petrucelli, Madeline Potter, Rosa Rademakers, Eliana M. Ramos, Kate Rankin, Katya Rascovsky, Erik D. Roberson, Emily Rogalski, Pheth Sengdy, Leslie Shaw, Maria C. Tartaglia, Nadine Tatton, Joanne Taylor, Arthur Toga, John Q. Trojanowski, Ping Wang, Sandra Weintraub, Bonnie Wong, Zbigniew Wszolek

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

93 Scopus citations

Abstract

Introduction: We created global rating scoring rules for the CDR^® plus NACC FTLD to detect and track early frontotemporal lobar degeneration (FTLD) and to conduct clinical trials in FTLD. Methods: The CDR plus NACC FTLD rating was applied to 970 sporadic and familial participants from the baseline visit of Advancing Research and Treatment in Frontotemporal Lobar Degeneration (ARTFL)/Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS). Each of the eight domains of the CDR plus NACC FTLD was equally weighed in determining the global score. An interrater reliability study was completed for 40 participants. Results: The CDR plus NACC FTLD showed very good interrater reliability. It was especially useful in detecting clinical features of mild non-fluent/agrammatic variant primary progressive aphasia participants. Discussion: The global CDR plus NACC FTLD score could be an attractive outcome measure for clinical trials in symptomatic FTLD, and may be useful in natural history studies and clinical trials in FTLD spectrum disorders.

Original language	English (US)
Pages (from-to)	106-117
Number of pages	12
Journal	Alzheimer's and Dementia
Volume	16
Issue number	1
DOIs	https://doi.org/10.1002/alz.12033
State	Published - Jan 1 2020

Funding

informationThis work is supported by the National Institutes of Health (grants U01 AG045390, U54 NS092089, U24 AG021886, and U01 AG016976).We extend our appreciation to Drs. John Hsiao and Dallas Anderson from the National Institute on Aging, Drs. Marg Sutherland and Codrin Lungu from the National Institute of Neurological Disorders and Stroke, the staff of all centers, and particularly our patients and their families for their participation in the ARTFL and LEFFTDS protocols.

Keywords

CDR
CDR plus NACC FTLD
behavior, comportment, and personality
frontotemporal lobar degeneration
global rating
language

ASJC Scopus subject areas

Epidemiology
Health Policy
Developmental Neuroscience
Clinical Neurology
Geriatrics and Gerontology
Cellular and Molecular Neuroscience
Psychiatry and Mental health

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1002/alz.12033

Cite this

Miyagawa, T., Brushaber, D., Syrjanen, J., Kremers, W., Fields, J., Forsberg, L. K., Heuer, H. W., Knopman, D., Kornak, J., Boxer, A., Rosen, H. J., Boeve, B. F., Appleby, B., Bordelon, Y., Bove, J., Brannelly, P., Caso, C., Coppola, G., Dever, R., ... Wszolek, Z. (2020). Utility of the global CDR^® plus NACC FTLD rating and development of scoring rules: Data from the ARTFL/LEFFTDS Consortium. Alzheimer's and Dementia, 16(1), 106-117. https://doi.org/10.1002/alz.12033

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title = "Utility of the global CDR{\textregistered} plus NACC FTLD rating and development of scoring rules: Data from the ARTFL/LEFFTDS Consortium",

abstract = "Introduction: We created global rating scoring rules for the CDR{\textregistered} plus NACC FTLD to detect and track early frontotemporal lobar degeneration (FTLD) and to conduct clinical trials in FTLD. Methods: The CDR plus NACC FTLD rating was applied to 970 sporadic and familial participants from the baseline visit of Advancing Research and Treatment in Frontotemporal Lobar Degeneration (ARTFL)/Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS). Each of the eight domains of the CDR plus NACC FTLD was equally weighed in determining the global score. An interrater reliability study was completed for 40 participants. Results: The CDR plus NACC FTLD showed very good interrater reliability. It was especially useful in detecting clinical features of mild non-fluent/agrammatic variant primary progressive aphasia participants. Discussion: The global CDR plus NACC FTLD score could be an attractive outcome measure for clinical trials in symptomatic FTLD, and may be useful in natural history studies and clinical trials in FTLD spectrum disorders.",

keywords = "CDR, CDR plus NACC FTLD, behavior, comportment, and personality, frontotemporal lobar degeneration, global rating, language",

author = "Toji Miyagawa and Danielle Brushaber and Jeremy Syrjanen and Walter Kremers and Julie Fields and Forsberg, {Leah K.} and Heuer, {Hilary W.} and David Knopman and John Kornak and Adam Boxer and Rosen, {Howard J.} and Boeve, {Bradley F.} and Brian Appleby and Yvette Bordelon and Jessica Bove and Patrick Brannelly and Christina Caso and Giovanni Coppola and Reilly Dever and Christina Dheel and Bradford Dickerson and Susan Dickinson and Sophia Dominguez and Kimiko Domoto-Reilly and Kelley Faber and Jessica Ferrell and Ann Fishman and Jamie Fong and Tatiana Foroud and Ralitza Gavrilova and Debra Gearhart and Behnaz Ghazanfari and Nupur Ghoshal and Goldman, {Jill S.} and Jonathan Graff-Radford and Neill Graff-Radford and Ian Grant and Murray Grossman and Dana Haley and Robin Hsiung and Edward Huey and David Irwin and David Jones and Lynne Jones and Kejal Kantarci and Anna Karydas and Daniel Kaufer and Diana Kerwin and Ruth Kraft and Joel Kramer and Walter Kukull and Irene Litvan and Diane Lucente and Codrin Lungu and Ian Mackenzie and Miranda Maldonado and Masood Manoochehri and Scott McGinnis and Emily McKinley and Mendez, {Mario F.} and Bruce Miller and Namita Multani and Chiadi Onyike and Jaya Padmanabhan and Alexander Pantelyat and Rodney Pearlman and Leonard Petrucelli and Madeline Potter and Rosa Rademakers and Ramos, {Eliana M.} and Kate Rankin and Katya Rascovsky and Roberson, {Erik D.} and Emily Rogalski and Pheth Sengdy and Leslie Shaw and Tartaglia, {Maria C.} and Nadine Tatton and Joanne Taylor and Arthur Toga and Trojanowski, {John Q.} and Ping Wang and Sandra Weintraub and Bonnie Wong and Zbigniew Wszolek",

note = "Publisher Copyright: {\textcopyright} 2020 the Alzheimer's Association",

year = "2020",

month = jan,

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doi = "10.1002/alz.12033",

language = "English (US)",

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Miyagawa, T, Brushaber, D, Syrjanen, J, Kremers, W, Fields, J, Forsberg, LK, Heuer, HW, Knopman, D, Kornak, J, Boxer, A, Rosen, HJ, Boeve, BF, Appleby, B, Bordelon, Y, Bove, J, Brannelly, P, Caso, C, Coppola, G, Dever, R, Dheel, C, Dickerson, B, Dickinson, S, Dominguez, S, Domoto-Reilly, K, Faber, K, Ferrell, J, Fishman, A, Fong, J, Foroud, T, Gavrilova, R, Gearhart, D, Ghazanfari, B, Ghoshal, N, Goldman, JS, Graff-Radford, J, Graff-Radford, N, Grant, I, Grossman, M, Haley, D, Hsiung, R, Huey, E, Irwin, D, Jones, D, Jones, L, Kantarci, K, Karydas, A, Kaufer, D, Kerwin, D, Kraft, R, Kramer, J, Kukull, W, Litvan, I, Lucente, D, Lungu, C, Mackenzie, I, Maldonado, M, Manoochehri, M, McGinnis, S, McKinley, E, Mendez, MF, Miller, B, Multani, N, Onyike, C, Padmanabhan, J, Pantelyat, A, Pearlman, R, Petrucelli, L, Potter, M, Rademakers, R, Ramos, EM, Rankin, K, Rascovsky, K, Roberson, ED, Rogalski, E, Sengdy, P, Shaw, L, Tartaglia, MC, Tatton, N, Taylor, J, Toga, A, Trojanowski, JQ, Wang, P, Weintraub, S, Wong, B & Wszolek, Z 2020, 'Utility of the global CDR^® plus NACC FTLD rating and development of scoring rules: Data from the ARTFL/LEFFTDS Consortium', Alzheimer's and Dementia, vol. 16, no. 1, pp. 106-117. https://doi.org/10.1002/alz.12033

TY - JOUR

T1 - Utility of the global CDR® plus NACC FTLD rating and development of scoring rules

T2 - Data from the ARTFL/LEFFTDS Consortium

AU - Miyagawa, Toji

AU - Brushaber, Danielle

AU - Syrjanen, Jeremy

AU - Kremers, Walter

AU - Fields, Julie

AU - Forsberg, Leah K.

AU - Heuer, Hilary W.

AU - Knopman, David

AU - Kornak, John

AU - Boxer, Adam

AU - Rosen, Howard J.

AU - Boeve, Bradley F.

AU - Appleby, Brian

AU - Bordelon, Yvette

AU - Bove, Jessica

AU - Brannelly, Patrick

AU - Caso, Christina

AU - Coppola, Giovanni

AU - Dever, Reilly

AU - Dheel, Christina

AU - Dickerson, Bradford

AU - Dickinson, Susan

AU - Dominguez, Sophia

AU - Domoto-Reilly, Kimiko

AU - Faber, Kelley

AU - Ferrell, Jessica

AU - Fishman, Ann

AU - Fong, Jamie

AU - Foroud, Tatiana

AU - Gavrilova, Ralitza

AU - Gearhart, Debra

AU - Ghazanfari, Behnaz

AU - Ghoshal, Nupur

AU - Goldman, Jill S.

AU - Graff-Radford, Jonathan

AU - Graff-Radford, Neill

AU - Grant, Ian

AU - Grossman, Murray

AU - Haley, Dana

AU - Hsiung, Robin

AU - Huey, Edward

AU - Irwin, David

AU - Jones, David

AU - Jones, Lynne

AU - Kantarci, Kejal

AU - Karydas, Anna

AU - Kaufer, Daniel

AU - Kerwin, Diana

AU - Kraft, Ruth

AU - Kramer, Joel

AU - Kukull, Walter

AU - Litvan, Irene

AU - Lucente, Diane

AU - Lungu, Codrin

AU - Mackenzie, Ian

AU - Maldonado, Miranda

AU - Manoochehri, Masood

AU - McGinnis, Scott

AU - McKinley, Emily

AU - Mendez, Mario F.

AU - Miller, Bruce

AU - Multani, Namita

AU - Onyike, Chiadi

AU - Padmanabhan, Jaya

AU - Pantelyat, Alexander

AU - Pearlman, Rodney

AU - Petrucelli, Leonard

AU - Potter, Madeline

AU - Rademakers, Rosa

AU - Ramos, Eliana M.

AU - Rankin, Kate

AU - Rascovsky, Katya

AU - Roberson, Erik D.

AU - Rogalski, Emily

AU - Sengdy, Pheth

AU - Shaw, Leslie

AU - Tartaglia, Maria C.

AU - Tatton, Nadine

AU - Taylor, Joanne

AU - Toga, Arthur

AU - Trojanowski, John Q.

AU - Wang, Ping

AU - Weintraub, Sandra

AU - Wong, Bonnie

AU - Wszolek, Zbigniew

PY - 2020/1/1

Y1 - 2020/1/1

N2 - Introduction: We created global rating scoring rules for the CDR® plus NACC FTLD to detect and track early frontotemporal lobar degeneration (FTLD) and to conduct clinical trials in FTLD. Methods: The CDR plus NACC FTLD rating was applied to 970 sporadic and familial participants from the baseline visit of Advancing Research and Treatment in Frontotemporal Lobar Degeneration (ARTFL)/Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS). Each of the eight domains of the CDR plus NACC FTLD was equally weighed in determining the global score. An interrater reliability study was completed for 40 participants. Results: The CDR plus NACC FTLD showed very good interrater reliability. It was especially useful in detecting clinical features of mild non-fluent/agrammatic variant primary progressive aphasia participants. Discussion: The global CDR plus NACC FTLD score could be an attractive outcome measure for clinical trials in symptomatic FTLD, and may be useful in natural history studies and clinical trials in FTLD spectrum disorders.

AB - Introduction: We created global rating scoring rules for the CDR® plus NACC FTLD to detect and track early frontotemporal lobar degeneration (FTLD) and to conduct clinical trials in FTLD. Methods: The CDR plus NACC FTLD rating was applied to 970 sporadic and familial participants from the baseline visit of Advancing Research and Treatment in Frontotemporal Lobar Degeneration (ARTFL)/Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS). Each of the eight domains of the CDR plus NACC FTLD was equally weighed in determining the global score. An interrater reliability study was completed for 40 participants. Results: The CDR plus NACC FTLD showed very good interrater reliability. It was especially useful in detecting clinical features of mild non-fluent/agrammatic variant primary progressive aphasia participants. Discussion: The global CDR plus NACC FTLD score could be an attractive outcome measure for clinical trials in symptomatic FTLD, and may be useful in natural history studies and clinical trials in FTLD spectrum disorders.

KW - CDR

KW - CDR plus NACC FTLD

KW - behavior, comportment, and personality

KW - frontotemporal lobar degeneration

KW - global rating

KW - language

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