Scientific 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 In the near future we will also be including publications that use other HD study datasets available through the Enroll-HD platform, please let us know if this applies to a publication of yours.




Ogilvie AC, Nopoulos PC, Schultz JL
Quantifying the onset of unintended weight loss in Huntington's disease: A retrospective analysis of Enroll-HD
J Huntingtons Dis
November 9, 2021
10 (4) :485-492
PMID: 34633327
Panegyres PK, Chen HY
Alzheimer's disease, Huntington's disease and cancer
J Clin Neurosci
November 1, 2021
93 :103-105
PMID: 34656231
Ogilvie AC, Nopoulos PC, Schultz JL
Sleep disturbances by disease type and stage in Huntington's disease
Parkinsonism Relat Disord
October 1, 2021
91 :13-18
PMID: 34450461
McDonnell EI, Wang Y, Goldman J, Marder K
Age of onset of Huntington's disease in carriers of reduced penetrance alleles
Mov Disord
September 18, 2021
PMID: 34536046
Crowell V, Houghton R, Tomar A, Fernandes T, Squitieri F
Modeling manifest Huntington's disease prevalence using diagnosed incidence and survival time
September 1, 2021
55 (5) :361-368
PMID: 34350853
van Duijn E, Fernandes AR, Abreu D, Ware JJ, Neacy E, Sampaio C
Incidence of completed suicide and suicide attempts in a global prospective study of Huntington's disease
BJPsych Open
August 31, 2021
7 (5) :e158
PMID: 34462049
Sathe S, Ware J, Levey J, Neacy E, Blumenstein R, Noble S, Mühlbäck A, Rosser A, Landwehrmeyer GB, Sampaio C
Enroll-HD: An integrated clinical research platform and worldwide observational study for Huntington's disease
Front Neurol
August 18, 2021
12 :667420
PMID: 34484094
PMCID: 8416308
Sprenger GP, Roos RAC, van Zwet E, Reijntjes RH, Achterberg WP, de Bot ST
The prevalence of pain in Huntington's disease in a large worldwide cohort
Parkinsonism Relat Disord
August 1, 2021
89 :73-78
PMID: 34243026
Abreu D, Ware J, Georgiou-Karistianis N, Leavitt BR, Fitzer-Attas CJ, Lobo R, Fernandes AR, Handley O, Anderson KE, Stout JC, Sampaio C
Utility of Huntington's disease assessments by disease stage: Floor/ceiling effects
Front Neurol
July 15, 2021
PMID: 34335433
PMCID: 8320772
Achenbach J, Saft C
Data from Enroll-HD: Is the prevalence of juvenile and pediatric Huntington's disease overestimated?
Parkinsonism Relat Disord
July 1, 2021
88 :1-2
PMID: 34049236
Lang C, Gries C, Lindenberg KS, Lewerenz J, Uhl S, Olsson C, Samzelius J, Landwehrmeyer GB
Monitoring the motor phenotype in Huntington's disease by analysis of keyboard typing during real life computer use
J Huntingtons Dis
June 9, 2021
10 (2) :259-268
PMID: 33459656
van der Zwaan KF, Jacobs M, van Zwet EW, Roos RAC, de Bot ST
Predictors of working capacity changes related to Huntington's disease: A longitudinal study
J Huntingtons Dis

10 (2) :269-276
PMID: 33523014
Achenbach J, Faissner S, Saft C
Differential diagnosis of Chorea-HIV infection delays diagnosis of Huntington's disease by years
Brain Sci
May 27, 2021
11 (6) :710
PMID: 34071882
Ghazaleh N, Houghton R, Palermo G, Schobel SA, Wijeratne PA, Long JD
Ranking the predictive power of clinical and biological features associated with disease progression in Huntington's disease
Front Neurol
May 21, 2021
12 :678484
PMID: 34093422
PMCID: 8176643
Symonds AL, Macerollo A, Foy K, Alusi SH, Davies R
Genetic and environmental contributors to neurodegeneration: An exploration of the effects of alcohol on clinical features of Huntington's disease using the Enroll-HD global platform
Int J Environ Res Public Health
May 12, 2021
18 (10) :5113
PMID: 34065918
Schultz JL, Saft C, Nopoulos PC
Association of CAG repeat length in the Huntington gene with cognitive performance in young adults
May 11, 2021
96 (19) :e2407-e2413
PMID: 33692166
Ogilvie AC, Gonzalez-Alegre P, Schultz JL
Diabetes mellitus is associated with an earlier age of onset of Huntington's disease
Mov Disord
April 2, 2021
36 (4) :1033-1034
PMID: 33368647
Hentosh S, Zhu L, Patino J, Furr JW, Rocha NP, Furr Stimming E
Sex differences in Huntington's disease: evaluating the Enroll-HD database
Mov Disord Clin Pract
April 1, 2021
8 (3) :420-426
PMID: 33816672
Oosterloo M, de Greef BTA, Bijlsma EK, Durr A, Tabrizi SJ, Estevez-Fraga C, de Die-Smulders CEM, Roos RAC
Disease onset in Huntington's disease: when is the conversion?
Mov Disord Clin Pract
March 31, 2021
8 (3) :352-360
PMID: 33816663
PMCID: 8015887
Cain KK, Flanigan JL, Dalrymple WA, Patrie J, Harrison MB, Barrett MJ
The effect of education on symptom onset and severity of Huntington's disease
Mov Disord Clin Pract
March 30, 2021
8 (4) :555-562
PMID: 33981788
PMCID: 8088098
Achenbach J, Saft C, Faissner S
Longitudinal evaluation of the effect of tricyclic antidepressants and neuroleptics on the course of Huntington's disease-data from a real world cohort
Brain Sci
March 25, 2021
11 (4) :413
PMID: 33805940
Mühlbäck A, Frank W, Klempířová O, Bezdíček O, Schmitt L, Hofstetter N, Landwehrmeyer GB, Klempíř J
Validation study of a German cognitive battery for Huntington's disease: Relationship between cognitive performance, functional decline, and disease burden
Arch Clin Neuropsychol
January 15, 2021
36 (1) :74-86
PMID: 32613239
Griffin BA, Booth MS, Busse M, Wild EJ, Setodji C, Warner JH, Sampaio C, Mohan A
Estimating the causal effects of modifiable, non-genetic factors on Huntington disease progression using propensity score weighting
Parkinsonism Relat Disord
January 13, 2021
83 :56-62
PMID: 33476879
Ranganathan M, Kostyk SK, Allain DC, Race JA, Daley AM
Age of onset and behavioral manifestations in Huntington's disease: An Enroll-HD cohort analysis
Clin Genet
January 1, 2021
99 (1) :133-142
PMID: 33020896
Lu AT, Narayan P, Grant MJ, Langfelder P, Wang N, Kwak S, Wilkinson H, Chen RZ, Chen J, Simon Bawden C, Rudiger SR, Ciosi M, Chatzi A, Maxwell A, Hore TA, Aaronson J, Rosinski J, Preiss A, Vogt TF, Coppola G, Monckton D, Snell RG, William Yang X, Horvath S
DNA methylation study of Huntington's disease and motor progression in patients and in animal models
Nat Commun
September 10, 2020
11 (1) :4529
PMID: 32913184
Mills JA, Long JD, Mohan A, Ware JJ, Sampaio C
Cognitive and motor norms for Huntington's disease
Arch Clin Neuropsychol
September 1, 2020
35 (6) :671–682
PMID: 32407458
Carlozzi NE, Boileau NR, Roberts A, Dayalu P, Hanifan DL, Miner JA, Claassen D, Provost EM
Understanding speech and swallowing difficulties in individuals with Huntington disease: Validation of the HDQLIFE Speech Difficulties and Swallowing Difficulties Item Banks
Qual Life Res
August 24, 2020
PMID: 32839864
Schultz JL, Moser AD, Nopoulos PC
The association between CAG repeat length and age of onset of juvenile-onset Huntington's disease
Brain Sci
August 20, 2020
10 (9) :E575
PMID: 32825467
Achenbach J, von Hein SM, Saft C
Functional and cognitive capacity differ in dystonic motor subtypes when compared to choreatic and hypokinetic-rigid motor subtypes in Huntington's disease
Brain Behav
August 1, 2020
10 (8) :e01704
PMID: 32530575
PMCID: 7428484
Langbehn DR, Hersch S
Clinical outcomes and selection criteria for prodromal Huntington's disease trials
Mov Disord
July 20, 2020
PMID: 32686867
Kwa L, Larson D, Yeh C, Bega D
Influence of age of onset on Huntington's disease phenotype
Tremor Other Hyperkinet Mov
July 9, 2020
10 (21)
PMID: 32775035
PMCID: 7394225
Jaini A, Yomtoob J, Yeh C, Bega D
Understanding HD psychosis: an analysis from the Enroll-HD database
Tremor Other Hyperkinet Mov
July 7, 2020
10 (16)
PMID: 32775030
PMCID: 7394199
Yhnell E, Furby H, Lowe RS, Brookes-Howell LC, Drew CJG, Playle R, Watson G, Metzler-Baddeley C, Rosser AE, Busse ME
A randomised feasibility study of computerised cognitive training as a therapeutic intervention for people with Huntington's disease (CogTrainHD)
Pilot Feasibility Stud
June 19, 2020
6 :88
PMID: 32577299
PMCID: 7304172
Witkowski G, Jachinska K, Stepniak I, Ziora-Jakutowicz K, Sienkiewicz-Jarosz H
Alterations in transcranial sonography among Huntington's disease patients with psychiatric symptoms
J Neural Transm (Vienna)
June 16, 2020
127 (7) :1047-1055
PMID: 32285254
PMCID: 7293686
Gaßner H, Jensen D, Marxreiter F, Kletsch A, Bohlen S, Schubert R, Muratori LM, Eskofier B, Klucken J, Winkler J, Reilmann R, Kohl Z
Gait variability as digital biomarker of disease severity in Huntington's disease
J Neurol
June 5, 2020
267 (6) :1594-1601
PMID: 32048014
PMCID: 7293689
De Lucia N, Peluso S, Roca A, De Michele G, Trojano L, Salvatore E
Perseverative behavior on verbal fluency task in patients with Huntington's disease: a retrospective study on a large patient sample
Arch Clin Neuropsychol
June 2, 2020
35 (4) :358-364
PMID: 31813981
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
June 1, 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 2, 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 1, 2020
87 (9) :857-865
PMID: 32087949
PMCID: 7156911
Schultz JL, Harshman LA, Langbehn DR, Nopoulos PC
Hypertension is associated with an earlier age of onset of Huntington's disease
Mov Disord
April 27, 2020
PMID: 32339315