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End-of-life measures in Huntington disease: HDQLIFE Meaning and Purpose, Concern with Death and Dying, and End of Life Planning.

Carlozzi NE, Boileau NR, Paulsen JS, Perlmutter JS, Lai JS, Hahn EA, McCormack MK, Nance MA, Cella D, Barton SK, Downing NR.

J Neurol. 2019 Jun 12. doi: 10.1007/s00415-019-09417-7. [Epub ahead of print]


Positive Affect and Well-Being in Huntington's Disease Moderates the Association Between Functional Impairment and HRQOL Outcomes.

Ready RE, Boileau NR, Barton SK, Lai JS, McCormack MK, Cella D, Fritz NE, Paulsen JS, Carlozzi NE.

J Huntingtons Dis. 2019;8(2):221-232. doi: 10.3233/JHD-180341.


Concurrent Cross-Sectional and Longitudinal Analyses of Multivariate White Matter Profiles and Clinical Functioning in Pre-Diagnosis Huntington Disease.

Ciarochi JA, Johnson HJ, Calhoun VD, Liu J, Espinoza FA, Bockholt HJ, Misiura M, Caprihan A, Plis S, Paulsen JS, Turner JA; PREDICT-HD Investigators and Coordinators of the Huntington Study Group.

J Huntingtons Dis. 2019;8(2):199-219. doi: 10.3233/JHD-180332.


Apathy Is Related to Cognitive Control and Striatum Volumes in Prodromal Huntington's Disease.

Misiura MB, Ciarochi J, Vaidya J, Bockholt J, Johnson HJ, Calhoun VD, Paulsen JS, Turner JA; PREDICT-HD Investigators & Working Group.

J Int Neuropsychol Soc. 2019 May;25(5):462-469. doi: 10.1017/S1355617719000067. Epub 2019 Feb 26.


Sample enrichment for clinical trials to show delay of onset in huntington disease.

Paulsen JS, Lourens S, Kieburtz K, Zhang Y.

Mov Disord. 2019 Feb;34(2):274-280. doi: 10.1002/mds.27595. Epub 2019 Jan 14.


Dynamic functional network connectivity in Huntington's disease and its associations with motor and cognitive measures.

Espinoza FA, Liu J, Ciarochi J, Turner JA, Vergara VM, Caprihan A, Misiura M, Johnson HJ, Long JD, Bockholt JH, Paulsen JS, Calhoun VD.

Hum Brain Mapp. 2019 Apr 15;40(6):1955-1968. doi: 10.1002/hbm.24504. Epub 2019 Jan 7.


Disease Progression in Huntington Disease: An Analysis of Multiple Longitudinal Outcomes.

Garcia TP, Wang Y, Shoulson I, Paulsen JS, Marder K.

J Huntingtons Dis. 2018;7(4):337-344. doi: 10.3233/JHD-180297.


Regional subcortical shape analysis in premanifest Huntington's disease.

Tang X, Ross CA, Johnson H, Paulsen JS, Younes L, Albin RL, Ratnanather JT, Miller MI.

Hum Brain Mapp. 2019 Apr 1;40(5):1419-1433. doi: 10.1002/hbm.24456. Epub 2018 Oct 30.


Genetic Modification of Huntington Disease Acts Early in the Prediagnosis Phase.

Long JD, Lee JM, Aylward EH, Gillis T, Mysore JS, Abu Elneel K, Chao MJ, Paulsen JS, MacDonald ME, Gusella JF.

Am J Hum Genet. 2018 Sep 6;103(3):349-357. doi: 10.1016/j.ajhg.2018.07.017. Epub 2018 Aug 16.


Suicidal Ideation Assessment in Individuals with Premanifest and Manifest Huntington Disease.

Wesson M, Boileau NR, Perlmutter JS, Paulsen JS, Barton SK, McCormack MK, Carlozzi NE.

J Huntingtons Dis. 2018;7(3):239-249. doi: 10.3233/JHD-180299.


High and Low Levels of an NTRK2-Driven Genetic Profile Affect Motor- and Cognition-Associated Frontal Gray Matter in Prodromal Huntington's Disease.

Ciarochi JA, Liu J, Calhoun V, Johnson H, Misiura M, Bockholt HJ, Espinoza FA, Caprihan A, Plis S, Turner JA, Paulsen JS; PREDICT-HD Investigators and Coordinators of the Huntington Study Group.

Brain Sci. 2018 Jun 22;8(7). pii: E116. doi: 10.3390/brainsci8070116.


Understanding patient-reported outcome measures in Huntington disease: at what point is cognitive impairment related to poor measurement reliability?

Carlozzi NE, Schilling S, Kratz AL, Paulsen JS, Frank S, Stout JC.

Qual Life Res. 2018 Oct;27(10):2541-2555. doi: 10.1007/s11136-018-1912-6. Epub 2018 Jun 16.


A Fully-Automated Subcortical and Ventricular Shape Generation Pipeline Preserving Smoothness and Anatomical Topology.

Tang X, Luo Y, Chen Z, Huang N, Johnson HJ, Paulsen JS, Miller MI.

Front Neurosci. 2018 May 17;12:321. doi: 10.3389/fnins.2018.00321. eCollection 2018.


Agreement between clinician-rated versus patient-reported outcomes in Huntington disease.

Carlozzi NE, Boileau NR, Perlmutter JS, Chou KL, Stout JC, Paulsen JS, McCormack MK, Cella D, Nance MA, Lai JS, Dayalu P.

J Neurol. 2018 Jun;265(6):1443-1453. doi: 10.1007/s00415-018-8852-5. Epub 2018 Apr 23.


Genetics Modulate Gray Matter Variation Beyond Disease Burden in Prodromal Huntington's Disease.

Liu J, Ciarochi J, Calhoun VD, Paulsen JS, Bockholt HJ, Johnson HJ, Long JD, Lin D, Espinoza FA, Misiura MB, Caprihan A, Turner JA; PREDICT-HD Investigators and Coordinators of the Huntington Study Group.

Front Neurol. 2018 Mar 29;9:190. doi: 10.3389/fneur.2018.00190. eCollection 2018.


Relationships Among Apathy, Health-Related Quality of Life, and Function in Huntington's Disease.

Fritz NE, Boileau NR, Stout JC, Ready R, Perlmutter JS, Paulsen JS, Quaid K, Barton S, McCormack MK, Perlman SL, Carlozzi NE; Huntington Disease Quality of Life Site Investigators and Coordinators, University of Michigan, University of Iowa, Indiana University, Johns Hopkins University, University of California, Rutgers University, Piscataway, Washington University, Struthers Parkinson’s Center, Cleveland Clinic Foundation, University of California, Northwestern University.

J Neuropsychiatry Clin Neurosci. 2018 Summer;30(3):194-201. doi: 10.1176/appi.neuropsych.17080173. Epub 2018 Mar 21.


Whole-Brain Connectivity in a Large Study of Huntington's Disease Gene Mutation Carriers and Healthy Controls.

Espinoza FA, Turner JA, Vergara VM, Miller RL, Mennigen E, Liu J, Misiura MB, Ciarochi J, Johnson HJ, Long JD, Bockholt HJ, Magnotta VA, Paulsen JS, Calhoun VD.

Brain Connect. 2018 Apr;8(3):166-178. doi: 10.1089/brain.2017.0538. Epub 2018 Mar 8.


MicroRNAs in CSF as prodromal biomarkers for Huntington disease in the PREDICT-HD study.

Reed ER, Latourelle JC, Bockholt JH, Bregu J, Smock J, Paulsen JS, Myers RH; PREDICT-HD CSF ancillary study investigators.

Neurology. 2018 Jan 23;90(4):e264-e272. doi: 10.1212/WNL.0000000000004844. Epub 2017 Dec 27.


Rating scales for cognition in Huntington's disease: Critique and recommendations.

Mestre TA, Bachoud-Lévi AC, Marinus J, Stout JC, Paulsen JS, Como P, Duff K, Sampaio C, Goetz CG, Cubo E, Stebbins GT, Martinez-Martin P; Members of the MDS Committee on Rating Scales Development.

Mov Disord. 2018 Feb;33(2):187-195. doi: 10.1002/mds.27227. Epub 2017 Dec 26. Review.


Evaluating cognition in individuals with Huntington disease: Neuro-QoL cognitive functioning measures.

Lai JS, Goodnight S, Downing NR, Ready RE, Paulsen JS, Kratz AL, Stout JC, McCormack MK, Cella D, Ross C, Russell J, Carlozzi NE.

Qual Life Res. 2018 Mar;27(3):811-822. doi: 10.1007/s11136-017-1755-6. Epub 2017 Dec 8.


Understanding the need for assistance with survey completion in people with Huntington disease.

Hahn EA, Downing NR, Stout JC, Paulsen JS, Ready B, Goodnight S, Lai JS, Miner JA, Carlozzi NE.

Qual Life Res. 2018 Mar;27(3):801-810. doi: 10.1007/s11136-017-1747-6. Epub 2017 Dec 6.


Reliability and Validity of the HD-PRO-TriadTM, a Health-Related Quality of Life Measure Designed to Assess the Symptom Triad of Huntington's Disease.

Boileau NR, Stout JC, Paulsen JS, Cella D, McCormack MK, Nance MA, Frank S, Lai JS, Carlozzi NE.

J Huntingtons Dis. 2017;6(3):201-215. doi: 10.3233/JHD-170238.


Cognitive and behavioral changes in Huntington disease before diagnosis.

Paulsen JS, Miller AC, Hayes T, Shaw E.

Handb Clin Neurol. 2017;144:69-91. doi: 10.1016/B978-0-12-801893-4.00006-7. Review.


Mapping the order and pattern of brain structural MRI changes using change-point analysis in premanifest Huntington's disease.

Wu D, Faria AV, Younes L, Mori S, Brown T, Johnson H, Paulsen JS, Ross CA, Miller MI; PREDICT-HD Investigators and Coordinators of the Huntington Study Group.

Hum Brain Mapp. 2017 Oct;38(10):5035-5050. doi: 10.1002/hbm.23713. Epub 2017 Jun 28.


Dynamic Prediction of Motor Diagnosis in Huntington's Disease Using a Joint Modeling Approach.

Li K, Furr-Stimming E, Paulsen JS, Luo S; PREDICT-HD Investigators of the Huntington Study Group.

J Huntingtons Dis. 2017;6(2):127-137. doi: 10.3233/JHD-170236.


Patient-reported outcome measures in Huntington disease: Quality of life in neurological disorders (Neuro-QoL) social functioning measures.

Carlozzi NE, Hahn EA, Goodnight SM, Kratz AL, Paulsen JS, Stout JC, Frank S, Miner JA, Cella D, Gershon RC, Schilling SG, Ready RE.

Psychol Assess. 2018 Apr;30(4):450-458. doi: 10.1037/pas0000479. Epub 2017 May 29.


Data quality assurance and control in cognitive research: Lessons learned from the PREDICT-HD study.

Westervelt HJ, Bernier RA, Faust M, Gover M, Bockholt HJ, Zschiegner R, Long JD, Paulsen JS; PREDICT-HD Investigators; Coordinators of the Huntington Study Group.

Int J Methods Psychiatr Res. 2017 Sep;26(3). doi: 10.1002/mpr.1534. Epub 2017 Feb 17.


Cognitive Control, Learning, and Clinical Motor Ratings Are Most Highly Associated with Basal Ganglia Brain Volumes in the Premanifest Huntington's Disease Phenotype.

Misiura MB, Lourens S, Calhoun VD, Long J, Bockholt J, Johnson H, Zhang Y, Paulsen JS, Turner JA, Liu J, Kara B, Fall E; PREDICT-HD Investigators & Working Group.

J Int Neuropsychol Soc. 2017 Feb;23(2):159-170. doi: 10.1017/S1355617716001132.


Substance abuse may hasten motor onset of Huntington disease: Evaluating the Enroll-HD database.

Schultz JL, Kamholz JA, Moser DJ, Feely SM, Paulsen JS, Nopoulos PC.

Neurology. 2017 Feb 28;88(9):909-915. doi: 10.1212/WNL.0000000000003661. Epub 2017 Feb 1.


Bayesian Covariate Selection in Mixed-Effects Models For Longitudinal Shape Analysis.

Muralidharan P, Fishbaugh J, Kim EY, Johnson HJ, Paulsen JS, Gerig G, Fletcher PT.

Proc IEEE Int Symp Biomed Imaging. 2016 Apr;2016:656-659. doi: 10.1109/ISBI.2016.7493352. Epub 2016 Jun 16.


Longitudinal diffusion changes in prodromal and early HD: Evidence of white-matter tract deterioration.

Shaffer JJ, Ghayoor A, Long JD, Kim RE, Lourens S, O'Donnell LJ, Westin CF, Rathi Y, Magnotta V, Paulsen JS, Johnson HJ.

Hum Brain Mapp. 2017 Mar;38(3):1460-1477. doi: 10.1002/hbm.23465. Epub 2017 Jan 3.


Phenotype Characterization of HD Intermediate Alleles in PREDICT-HD.

Downing NR, Lourens S, De Soriano I, Long JD, Paulsen JS; PREDICT-HD Investigators and Coordinators of the Huntington Study Group.

J Huntingtons Dis. 2016 Dec 15;5(4):357-368.


Validation of a prognostic index for Huntington's disease.

Long JD, Langbehn DR, Tabrizi SJ, Landwehrmeyer BG, Paulsen JS, Warner J, Sampaio C.

Mov Disord. 2017 Feb;32(2):256-263. doi: 10.1002/mds.26838. Epub 2016 Nov 28.


Patterns of Co-Occurring Gray Matter Concentration Loss across the Huntington Disease Prodrome.

Ciarochi JA, Calhoun VD, Lourens S, Long JD, Johnson HJ, Bockholt HJ, Liu J, Plis SM, Paulsen JS, Turner JA; PREDICT-HD Investigators and Coordinators of the Huntington Study Group.

Front Neurol. 2016 Sep 21;7:147. eCollection 2016.


Cross-sectional and longitudinal multimodal structural imaging in prodromal Huntington's disease.

Harrington DL, Long JD, Durgerian S, Mourany L, Koenig K, Bonner-Jackson A, Paulsen JS; PREDICT-HD Investigators of the Huntington Study Group, Rao SM.

Mov Disord. 2016 Nov;31(11):1664-1675. doi: 10.1002/mds.26803. Epub 2016 Sep 13.


An Open-Source Label Atlas Correction Tool and Preliminary Results on Huntingtons Disease Whole-Brain MRI Atlases.

Forbes JL, Kim RE, Paulsen JS, Johnson HJ.

Front Neuroinform. 2016 Aug 3;10:29. doi: 10.3389/fninf.2016.00029. eCollection 2016.


HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD).

Carlozzi NE, Schilling SG, Lai JS, Paulsen JS, Hahn EA, Perlmutter JS, Ross CA, Downing NR, Kratz AL, McCormack MK, Nance MA, Quaid KA, Stout JC, Gershon RC, Ready RE, Miner JA, Barton SK, Perlman SL, Rao SM, Frank S, Shoulson I, Marin H, Geschwind MD, Dayalu P, Goodnight SM, Cella D.

Qual Life Res. 2016 Oct;25(10):2441-2455. doi: 10.1007/s11136-016-1386-3. Epub 2016 Aug 13.


New measures to capture end of life concerns in Huntington disease: Meaning and Purpose and Concern with Death and Dying from HDQLIFE (a patient-reported outcomes measurement system).

Carlozzi NE, Downing NR, McCormack MK, Schilling SG, Perlmutter JS, Hahn EA, Lai JS, Frank S, Quaid KA, Paulsen JS, Cella D, Goodnight SM, Miner JA, Nance MA.

Qual Life Res. 2016 Oct;25(10):2403-2415. doi: 10.1007/s11136-016-1354-y. Epub 2016 Jul 8.


Effect of Deutetrabenazine on Chorea Among Patients With Huntington Disease: A Randomized Clinical Trial.

Huntington Study Group, Frank S, Testa CM, Stamler D, Kayson E, Davis C, Edmondson MC, Kinel S, Leavitt B, Oakes D, O'Neill C, Vaughan C, Goldstein J, Herzog M, Snively V, Whaley J, Wong C, Suter G, Jankovic J, Jimenez-Shahed J, Hunter C, Claassen DO, Roman OC, Sung V, Smith J, Janicki S, Clouse R, Saint-Hilaire M, Hohler A, Turpin D, James RC, Rodriguez R, Rizer K, Anderson KE, Heller H, Carlson A, Criswell S, Racette BA, Revilla FJ, Nucifora F Jr, Margolis RL, Ong M, Mendis T, Mendis N, Singer C, Quesada M, Paulsen JS, Brashers-Krug T, Miller A, Kerr J, Dubinsky RM, Gray C, Factor SA, Sperin E, Molho E, Eglow M, Evans S, Kumar R, Reeves C, Samii A, Chouinard S, Beland M, Scott BL, Hickey PT, Esmail S, Fung WL, Gibbons C, Qi L, Colcher A, Hackmyer C, McGarry A, Klos K, Gudesblatt M, Fafard L, Graffitti L, Schneider DP, Dhall R, Wojcieszek JM, LaFaver K, Duker A, Neefus E, Wilson-Perez H, Shprecher D, Wall P, Blindauer KA, Wheeler L, Boyd JT, Houston E, Farbman ES, Agarwal P, Eberly SW, Watts A, Tariot PN, Feigin A, Evans S, Beck C, Orme C, Edicola J, Christopher E.

JAMA. 2016 Jul 5;316(1):40-50. doi: 10.1001/jama.2016.8655.


Longitudinal Changes in the Motor Learning-Related Brain Activation Response in Presymptomatic Huntington's Disease.

Holtbernd F, Tang CC, Feigin A, Dhawan V, Ghilardi MF, Paulsen JS, Guttman M, Eidelberg D.

PLoS One. 2016 May 18;11(5):e0154742. doi: 10.1371/journal.pone.0154742. eCollection 2016.


Linking white matter and deep gray matter alterations in premanifest Huntington disease.

Faria AV, Ratnanather JT, Tward DJ, Lee DS, van den Noort F, Wu D, Brown T, Johnson H, Paulsen JS, Ross CA, Younes L, Miller MI; PREDICT-HD Investigators and Coordinators of the Huntington Study Group.

Neuroimage Clin. 2016 Feb 26;11:450-460. doi: 10.1016/j.nicl.2016.02.014. eCollection 2016.


Cognitive changes associated with switching to frequent nocturnal hemodialysis or renal transplantation.

Dixon BS, VanBuren JM, Rodrigue JR, Lockridge RS, Lindsay R, Chan C, Rocco MV, Oleson JJ, Beglinger L, Duff K, Paulsen JS, Stokes JB; FHN study.

BMC Nephrol. 2016 Jan 22;17:12. doi: 10.1186/s12882-016-0223-9.


The impact of oculomotor functioning on neuropsychological performance in Huntington disease.

Carvalho JO, Long JD, Westervelt HJ, Smith MM, Bruce JM, Kim JI, Mills JA, Paulsen JS; PREDICT-HD Investigators And Coordinators Of The Huntington Study Group.

J Clin Exp Neuropsychol. 2016;38(2):217-26. doi: 10.1080/13803395.2015.1101054.


Longitudinal Psychiatric Symptoms in Prodromal Huntington's Disease: A Decade of Data.

Epping EA, Kim JI, Craufurd D, Brashers-Krug TM, Anderson KE, McCusker E, Luther J, Long JD, Paulsen JS; PREDICT-HD Investigators and Coordinators of the Huntington Study Group.

Am J Psychiatry. 2016 Feb 1;173(2):184-92. doi: 10.1176/appi.ajp.2015.14121551. Epub 2015 Oct 16.


Practice Effects and Stability of Neuropsychological and UHDRS Tests Over Short Retest Intervals in Huntington Disease.

Beglinger LJ, Adams WH, Fiedorowicz JG, Duff K, Langbehn D, Biglan K, Caviness J, Olson B, Paulsen JS.

J Huntingtons Dis. 2015;4(3):251-60. doi: 10.3233/JHD-150159.


Motor onset and diagnosis in Huntington disease using the diagnostic confidence level.

Liu D, Long JD, Zhang Y, Raymond LA, Marder K, Rosser A, McCusker EA, Mills JA, Paulsen JS; PREDICT-HD Investigators and Coordinators of the Huntington Study Group.

J Neurol. 2015 Dec;262(12):2691-8. doi: 10.1007/s00415-015-7900-7. Epub 2015 Sep 26.


Multivariate prediction of motor diagnosis in Huntington's disease: 12 years of PREDICT-HD.

Long JD, Paulsen JS; PREDICT-HD Investigators and Coordinators of the Huntington Study Group.

Mov Disord. 2015 Oct;30(12):1664-72. doi: 10.1002/mds.26364. Epub 2015 Sep 4.


Intra-individual Variability in Prodromal Huntington Disease and Its Relationship to Genetic Burden.

Musso M, Westervelt HJ, Long JD, Morgan E, Woods SP, Smith MM, Lu W, Paulsen JS; PREDICT-HD Investigators of the Huntington Study Group.

J Int Neuropsychol Soc. 2015 Jan;21(1):8-21. doi: 10.1017/S1355617714001076.


Preliminary analysis using multi-atlas labeling algorithms for tracing longitudinal change.

Kim RE, Lourens S, Long JD, Paulsen JS, Johnson HJ.

Front Neurosci. 2015 Jul 14;9:242. doi: 10.3389/fnins.2015.00242. eCollection 2015.


Prefrontal cortex white matter tracts in prodromal Huntington disease.

Matsui JT, Vaidya JG, Wassermann D, Kim RE, Magnotta VA, Johnson HJ, Paulsen JS; PREDICT-HD Investigators and Coordinators of the Huntington Study Group.

Hum Brain Mapp. 2015 Oct;36(10):3717-32. doi: 10.1002/hbm.22835. Epub 2015 Jul 14.

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