Scientific Publications

Scientific Publications

Enroll-HD is both a worldwide observational study and a clinical research platform supporting various studies, with an overall objective to accelerate HD therapeutic development. A distinctive element of Enroll-HD is that the clinical data collected from participants is made widely available to any interested researcher to maximize the knowledge gleaned from it. The publications presented here have all used the datasets that are periodically made available, and illustrate some of the areas of HD research that Enroll-HD is directly influencing. As ever, we are enormously grateful to all of the thousands of participants around the world who selflessly give their time and energy, as well as to the dedicated staff at the clinical sites who make Enroll-HD work.

If your publication that uses Enroll-HD data is not included in this gallery, or you know of a publication that should be included, then please let us know at




Scarabino D, Veneziano L, Peconi M, Frontali M, Mantuano E, Corbo RM
Leukocyte telomere shortening in Huntington's disease
J Neurol Sci
January 15, 2019
396 :25-29
PMID: 30396032
Gatto E, Parisi V, Persi G, Fernandez Rey E, Cesarini M, Luis Etcheverry J, Rivera P, Squitieri F
Optical coherence tomography (OCT) study in Argentinean Huntington's disease patients
Int J Neurosci
December 1, 2018
128 (12) :1157-1162
PMID: 29912591
Schultz JL, Kamholz JA, Nopoulos PC, Killoran A
Comparing Risperidone and Olanzapine to Tetrabenazine for the management of chorea in Huntington disease: An analysis from the Enroll-HD database
Mov Disord Clin Pract
November 30, 2018
6 (2) :132-138
PMID: 30838312
PMCID: 6384174
Watkins K, Purks J, Kumar A, Sokas RK, Heller H, Anderson KE
Huntington's disease and employment: The relative contributions of cognitive and motor decline to the decision to leave work
J Huntingtons Dis
November 24, 2018
7 (4) :367-377
PMID: 30198875
Long JD, Mills JA
Joint modeling of multivariate longitudinal data and survival data in several observational studies of Huntington's disease
BMC Med Res Methodol
November 16, 2018
18 (1) :138
PMID: 30445915
PMCID: 6240282
Rocha NP, Mwangi B, Gutierrez Candano CA, Sampaio C, Furr Stimming E, Teixeira AL
The clinical picture of psychosis in manifest Huntington's disease: a comprehensive analysis of the Enroll-HD database
Front Neurol
November 6, 2018
9 :930
PMID: 30459704
PMCID: 6232301
Honrath P, Dogan I, Wudarczyk O, Görlich KS, Votinov M, Werner CJ, Schumann B, Overbeck RT, Schulz JB, Landwehrmeyer BG, Gur RE, Habel U, Reetz K, Enroll-HD investigators
Risk factors of suicidal ideation in Huntington's disease: literature review and data from Enroll-HD
J Neurol
November 2, 2018
265 (11) :2548-2561
PMID: 30167880
Fusilli C, Migliore S, Mazza T, Consoli F, De Luca A, Barbagallo G, Ciammola A, Gatto EM, Cesarini M, Etcheverry JL, Parisi V, Al-Oraimi M, Al-Harrasi S, Al-Salmi Q, Marano M, Vonsattel JG, Sabatini U, Landwehrmeyer GB, Squitieri F
Biological and clinical manifestations of juvenile Huntington's disease: a retrospective analysis
Lancet Neurol
November 1, 2018
17 (11) :986-993
PMID: 30243861
Barkhuizen M, Rodrigues FB, Anderson DG, Winkens B, REGISTRY Investigators of EHDN, Wild EJ, Kramer BW, Gavilanes AWD
Perinatal insults and neurodevelopmental disorders may impact Huntington's disease age of diagnosis
Parkinsonism Relat Disord
October 1, 2018
55 :55-60
PMID: 29804730
PMCID: 6226577
Schultz JL, Killoran A, Nopoulos PC, Chabal CC, Moser DJ, Kamholz JA
Evaluating depression and suicidality in tetrabenazine users with Huntington disease
July 17, 2018
91 (3) :202-207
PMID: 29925548
Aziz NA, van der Burg JMM, Tabrizi SJ, Landwehrmeyer GB
Overlap between age-at-onset and disease-progression determinants in Huntington disease
June 12, 2018
90 (24) :2099-2106
PMID: 29743208
PMCID: 5996832
Schultz JL, Nopoulos PC, Gonzalez-Alegre P
Human immunodeficiency virus infection in Huntington's disease is associated with an earlier age of symptom onset
J Huntingtons Dis
June 1, 2018
7 (2) :163-166
PMID: 29843248
Sun Z, Li Y, Ghosh S, Cheng Y, Mohan A, Sampaio C, Hu J
A data-driven method for generating robust symptom onset indicators in Huntington's disease Registry data
AMIA Annu Symp Proc
April 16, 2018
PMID: 29854234
PMCID: 5977625
Winder JY, Roos RAC
Premanifest Huntington's disease: Examination of oculomotor abnormalities in clinical practice
PLoS One
March 1, 2018
13 (3) :e0193866
PMID: 29494703
PMCID: 5832368
Kringlen G, Kinsley L, Aufox S, Rouleau G, Bega D
The impact of family history on the clinical features of Huntington's disease
J Huntingtons Dis
December 12, 2017
6 (4) :327-335
PMID: 28984613
van der Burg JMM, Gardiner SL, Ludolph AC, Landwehrmeyer GB, Roos RAC, Aziz NA
Body weight is a robust predictor of clinical progression in Huntington disease
Ann Neurol
September 1, 2017
82 (3) :479-483
PMID: 28779551
Ghosh S, Sun Z, Li Y, Cheng Y, Mohan A, Sampaio C, Hu J
An exploration of latent structure in observational Huntington's disease studies
AMIA Jt Summits Transl Sci Proc
July 26, 2017
2017 :92-102
PMID: 28815114
PMCID: 5543350
Walker T, Ghosh B, Kipps C
Assessing decline: visualising progression in Huntington's disease using a clinical dashboard with Enroll-HD data
J Huntingtons Dis
June 30, 2017
6 (2) :139-147
PMID: 28550266
Hervás D, Fornés-Ferrer V, Gómez-Escribano AP, Sequedo MD, Peiró C, Millán JM, Vázquez-Manrique RP
Metformin intake associates with better cognitive function in patients with Huntington's disease
PLoS One
June 20, 2017
12 (6) :e0179283
PMID: 28632780
PMCID: 5478119
Schultz JL, Kamholz JA, Moser DJ, Feely SM, Paulsen JS, Nopoulos PC
Substance abuse may hasten motor onset of Huntington disease: Evaluating the Enroll-HD database
February 28, 2017
88 (9) :909-915
PMID: 28148631
PMCID: 5331869
Frich JC, Rae D, Roxburgh R, Miedzybrodzka ZH, Edmondson M, Pope EB, Goodman L, Haddad MS, Giuliano J, Nelson EC, Guttman M, Nance M
Health care delivery practices in Huntington's disease specialty clinics: an international survey
J Huntingtons Dis
July 1, 2016
5 (2) :207-213
PMID: 27372053
PMCID: 4942722
Landwehrmeyer GB, Fitzer-Attas CJ, Giuliano JD, Gonçalves N, Anderson KE, Cardoso F, Ferreira JJ, Mestre TA, Stout JC, Sampaio C
Data analytics from Enroll-HD, a global clinical research platform for Huntington's disease
Mov Disord Clin Pract
June 22, 2016
4 (2) :212-224
PMID: 30363395
PMCID: 6174428
Bettencourt C, Hensman-Moss D, Flower M, Wiethoff S, Brice A, Goizet C, Stevanin G, Koutsis G, Karadima G, Panas M, Yescas-Gómez P, García-Velázquez LE, Alonso-Vilatela ME, Lima M, Raposo M, Traynor B, Sweeney M, Wood N, Giunti P, SPATAX Network, Durr A, Holmans P, Houlden H, Tabrizi SJ, Jones L
DNA repair pathways underlie a common genetic mechanism modulating onset in polyglutamine diseases
Ann Neurol
June 1, 2016
79 (6) :983-90
PMID: 27044000
PMCID: 4914895
McNally G, Rickards H, Horton M, Craufurd D
Exploring the validity of the short version of the Problem Behaviours Assessment (PBA-s) for Huntington's disease: a Rasch analysis
J Huntingtons Dis
September 1, 2015
4 (4) :347-69
PMID: 26756591