Enroll-HD

Publications

Publications leveraging Enroll-HD data, biosamples, and/or infrastructure.

Publications

Enroll-HD is both a worldwide observational study and a clinical research platform supporting various studies and trials, with an overall objective to accelerate HD therapeutic development. Clinical data and biosamples collected in Enroll-HD and other HD studies are made available through the Enroll-HD platform to any verified researcher per the Clinical Data and Biosample Access Policy to extract as much knowledge as possible. As ever, we are enormously grateful to the thousands of participants and families 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 possible.

When publishing their findings, researchers using these data and biosamples are expected to adhere to the Enroll-HD publication policy, including full acknowledgement of the individuals who contributed to the collection of the Enroll-HD data. The publications hosted here have all used the Enroll-HD datasets that are periodically made available and illustrate some of the areas of HD research that Enroll-HD is directly influencing.

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 info@chdifoundation.org.

Authors

Title

Journal

Harris KL, Kuan WL, Mason SL, Barker RA

Antidopaminergic treatment is associated with reduced chorea and irritability but impaired cognition in Huntington's disease (Enroll-HD)
J Neurol Neurosurg Psychiatry
Jun 01, 2020
91 (6) :622-630
PMID: 32229581
PMCID: 7279191

Julayanont P, Heilman KM, McFarland NR

Early-motor phenotype relates to neuropsychiatric and cognitive disorders in Huntington's disease
Mov Disord
May 02, 2020
35 (5) :781-788
PMID: 31922295

Ellis N, Tee A, McAllister B, Massey T, McLauchlan D, Stone T, Correia K, Loupe J, Kim KH, Barker D, Hong EP, Chao MJ, Long JD, Lucente D, Vonsattel JPG, Pinto RM, Elneel KA, Ramos EM, Mysore JS, Gillis T, Wheeler VC, Medway C, Hall L, Kwak S, Sampaio C, Ciosi M, Maxwell A, Chatzi A, Monckton DG, Orth M, Landwehrmeyer GB, Paulsen JS, Shoulson I, Myers RH, van Duijn E, Rickards H,…Holmans P

Genetic risk underlying psychiatric and cognitive symptoms in Huntington's disease
Biol Psychiatry
May 01, 2020
87 (9) :857-865
PMID: 32087949
PMCID: 7156911

Steventon JJ, Furby H, Ralph J, O’Callaghan P, Rosser AE, Wise RG, Busse M, Murphy K

Altered cerebrovascular response to acute exercise in patients with Huntington's disease
Brain Commun
Apr 16, 2020
2 (1) :fcaa044
PMID: 32566927
PMCID: 7293798

Fazio P, Fitzer-Attas CJ, Mrzljak L, Bronzova J, Nag S, Warner JH, Landwehrmeyer B, Al-Tawil N, Halldin C, Forsberg A, Ware J, Dilda V, Wood A, Sampaio C, Varrone A, PEARL-HD and LONGPDE10 study collaborators

PET molecular imaging of phosphodiesterase 10A: An early biomarker of Huntington's disease progressio
Mov Disord
Apr 03, 2020
35 (4) :606-615
PMID: 31967355

Goh AMY, You E, Perin S, Lautenschlager NT, Clay FJ, Loi SM, Chong T, Ames D, Chiu E, Ellis KA

Alcohol use, mental health, and functional capacity as predictors of workplace disability in a cohort with manifest Huntington's disease
J Neuropsychiatry Clin Neurosci
Feb 27, 2020
PMID: 32102602

Julayanont P, McFarland NR, Heilman KM

Mild cognitive impairment and dementia in motor manifest Huntington's disease: Classification and prevalence
J Neurol Sci
Jan 15, 2020
408 :116523
PMID: 31678902

Ciosi M, Maxwell A, Cumming SA, Hensman Moss DJ, Alshammari AM, Flower MD, Durr A, Leavitt BR, Roos RAC, TRACK-HD team, Enroll-HD team, Holmans P, Jones L, Langbehn DR, Kwak S, Tabrizi SJ, Monckton DG

A genetic association study of glutamine-encoding DNA sequence structures, somatic CAG expansion, and DNA repair gene variants, with Huntington disease clinical outcomes
EBioMedicine
Oct 10, 2019
48 :568-580
PMID: 31607598
PMCID: 6838430

Drew CJG, Quinn L, Hamana K, Williams-Thomas R, Marsh L, Dimitropoulou P, Playle R, Griffin BA, Kelson M, Schubert R, Muratori L, Reilmann R, Rosser A, Busse M

Physical activity and exercise outcomes in Huntington disease (PACE-HD): Protocol for a 12-month trial within cohort evaluation of a physical activity intervention in people with Huntington disease
Phys Ther
Sep 01, 2019
99 (9) :1201-1210
PMID: 31101920

Yomtoob J, Yeh C, Bega D

Ancillary service utilization and impact in Huntington's disease
J Huntingtons Dis
Aug 28, 2019
8 (3) :301-310
PMID: 31177235

Li F, Li K, Li C, Luo S, PREDICT-HD and ENROLL-HD Investigators of the Huntington Study Group

Predicting the risk of Huntington's disease with multiple longitudinal biomarkers
J Huntingtons Dis
Aug 27, 2019
8 (3) :323-332
PMID: 31256145
PMCID: 6718328

GeM-HD Consortium, Lee JM, Correia K, Loupe J, Kim KH, Barker D, Hong EP, Chao MJ, Long JD, Lucente D, Vonsattel JPG, Pinto RM, Abu Elneel K, Ramos EM, Mysore JS, Gillis T, Wheeler VC, MacDonald ME, Gusella JF, McAllister B, Massey T, Medway C, Stone TC, Hall L, Jones L, Holmans P, Kwak S, Ehrhardt AG, Sampaio C, Ciosi M,…Myers RH

CAG repeat not polyglutamine length determines timing of Huntington's disease onset
Cell
Aug 08, 2019
178 (4) :887-900
PMID: 31398342
PMCID: 6700281

Aubeeluck A, Stupple EJN, Schofield MB, Hughes AC, van der Meer L, Landwehrmeyer B, Ho AK

An international validation of a clinical tool to assess carers' quality of life in Huntington's disease
Front Psychol
Jul 23, 2019
10 :1658
PMID: 31402885
PMCID: 6676956

Zeitler B, Froelich S, Marlen K, Shivak DA, Yu Q, Li D, Pearl JR, Miller JC, Zhang L, Paschon DE, Hinkley SJ, Ankoudinova I, Lam S, Guschin D, Kopan L, Cherone JM, Nguyen HB, Qiao G, Ataei Y, Mendel MC, Amora R, Surosky R, Laganiere J, Vu BJ, Narayanan A, Sedaghat Y, Tillack K, Thiede C, Gärtner A, Kwak S, Bard J,…Zhang HS

Allele-selective transcriptional repression of mutant HTT for the treatment of Huntington's disease
Nat Med
Jul 01, 2019
25 (7) :1131-1142
PMID: 31263285

Bartoszek A, Aubeeluck A, Stupple E, Bartoszek A, Kocka K, Ślusarska B

Exploring the reliability and validity of the Huntington's disease quality of life battery for carers (HDQoL-C) within a polish population
Int J Environ Res Public Health
Jun 30, 2019
16 (13) :E2323
PMID: 31262100

Flower M, Lomeikaite V, Ciosi M, Cumming S, Morales F, Lo K, Hensman Moss D, Jones L, Holmans P, TRACK-HD Investigators, OPTIMISTIC Consortium, Monckton DG, Tabrizi SJ

MSH3 modifies somatic instability and disease severity in Huntington's and myotonic dystrophy type 1
Brain
Jun 19, 2019
142 (7) :1876–1886
PMID: 31216018

Tabrizi SJ, Leavitt BR, Landwehrmeyer GB, Wild EJ, Saft C, Barker RA, Blair NF, Craufurd D, Priller J, Rickards H, Rosser A, Kordasiewicz HB, Czech C, Swayze EE, Norris DA, Baumann T, Gerlach I, Schobel SA, Paz E, Smith AV, Bennett CF, Lane RM, Phase 1–2a IONIS-HTTRx Study Site Team

Targeting huntingtin expression in patients with Huntington's disease
N Engl J Med
Jun 13, 2019
380 (24) :2307-2316
PMID: 31059641

Shahn Z, Li Y, Sun Z, Mohan A, Sampaio C, Hu J

G-computation and hierarchical models for estimating multiple causal effects from observational disease registries with irregular visits
AMIA Jt Summits Transl Sci Proc
May 06, 2019
2019 :789-798
PMID: 31259036
PMCID: 6568089

Rojas NG, Ziliani JE, Cesarini ME, Etcheverry JL, Da Prat GA, McCusker E, Gatto EM

Late onset Huntington disease: phenotypic and genotypic characteristics of 10 cases in Argentina
J Huntingtons Dis
Apr 30, 2019
8 (2) :195-198
PMID: 31045517

Sun Z, Ghosh S, Li Y, Cheng Y, Mohan A, Sampaio C, Hu J

A probabilistic disease progression modeling approach and its application to integrated Huntington's disease observational data
JAMIA Open
Apr 01, 2019
2 (1) :123-130
PMID: 31984350
PMCID: 6951948

Goold R, Flower M, Moss DH, Medway C, Wood-Kaczmar A, Andre R, Farshim P, Bates GP, Holmans P, Jones L, Tabrizi SJ

FAN1 modifies Huntington's disease progression by stabilizing the expanded HTT CAG repeat
Hum Mol Genet
Feb 15, 2019
28 (4) :650-661
PMID: 30358836
PMCID: 6360275

Yu M, Tan K, Koloms K, Bega D

Assessment of caregiver burden in Huntington's disease
J Huntingtons Dis
Feb 13, 2019
8 (1) :111-114
PMID: 30594932

Castaldo I, De Rosa M, Romano A, Zuchegna C, Squitieri F, Mechelli R, Peluso S, Borrelli C, Del Mondo A, Salvatore E, Vescovi LA, Migliore S, De Michele G, Ristori G, Romano S, Avvedimento EV, Porcellini A

DNA damage signatures in peripheral blood cells as biomarkers in prodromal Huntington disease
Ann Neurol
Feb 04, 2019
85 (2) :296-301
PMID: 30549309

Schultz JL, Nopoulos PC, Killoran A, Kamholz JA

Statin use and delayed onset of Huntington's disease
Mov Disord
Feb 01, 2019
34 (2) :281-285
PMID: 30576007

Scarabino D, Veneziano L, Peconi M, Frontali M, Mantuano E, Corbo RM

Leukocyte telomere shortening in Huntington's disease
J Neurol Sci
Jan 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
Dec 01, 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
Nov 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
Nov 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
Nov 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
Nov 06, 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
Nov 02, 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
Nov 01, 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
Oct 01, 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
Neurology
Jul 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
Neurology
Jun 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
Jun 01, 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
Apr 16, 2018
:1635-1644
PMID: 29854234
PMCID: 5977625

Winder JY, Roos RAC

Premanifest Huntington's disease: Examination of oculomotor abnormalities in clinical practice
PLoS One
Mar 01, 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
Dec 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
Sep 01, 2017
82 (3) :479-483
PMID: 28779551
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