Publications

Publications

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. 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.

Authors

Title

Journal

Tabrizi SJ, Schobel S, Gantman EC, Mansbach A, Borowsky B, Konstantinova P, Mestre TA, Panagoulias J, Ross CA, Zauderer M, Mullin AP, Romero K, Sivakumaran S, Turner EC, Long JD, Sampaio C, Huntington’s Disease Regulatory Science Consortium (HD-RSC)

A biological classification of Huntington's disease: the Integrated Staging System
Lancet Neurol
Jul 01, 2022
21 (7) :632-644
PMID: 35716693

Petracca M, Di Tella S, Solito M, Zinzi P, Lo Monaco MR, Di Lazzaro G, Calabresi P, Silveri MC, Bentivoglio AR

Clinical and genetic characteristics of late-onset Huntington's disease in a large European cohort
Eur J Neurol
Jul 01, 2022
29 (7) :1940-1951
PMID: 35357736

Harris KL, Mason SL, Barker RA

Exploring the predictors of financial impairment in Huntington's disease using the Enroll-HD dataset
J Neurol
Jul 01, 2022
269 (7) :3501-3510
PMID: 35165768
PMCID: 9217841

Warner JH, Long JD, Mills JA, Langbehn DR, Ware J, Mohan A, Sampaio C

Standardizing the CAP score in Huntington's disease by predicting age-at-onset
J Huntingtons Dis
Jun 03, 2022
11 (2) :153-171
PMID: 35466943

Achenbach J, Faissner S, Saft C

Resurrection of sildenafil: potential for Huntington's Disease, too?
J Neurol
May 28, 2022
PMID: 35633374

Achenbach J, Matusch A, Elmenhorst D, Bauer A, Saft C

Divergent effects of the nonselective adenosine receptor antagonist caffeine in pre-manifest and motor-manifest Huntington's disease
Biomedicines
May 27, 2022
10 (6) :1258
PMID: 35740281

Maffi S, Scaricamazza E, Migliore S, Casella M, Ceccarelli C, Squitieri F

Sleep quality and related clinical manifestations in Huntington disease
J Pers Med
May 25, 2022
12 (6) :864
PMID: 35743649

Lee JM, Huang Y, Orth M, Gillis T, Siciliano J, Hong E, Mysore JS, Lucente D, Wheeler VC, Seong IS, McLean ZL, Mills JA, McAllister B, Lobanov SV, Massey TH, Ciosi M, Landwehrmeyer GB, Paulsen JS, Dorsey ER, Shoulson I, Sampaio C, Monckton DG, Kwak S, Holmans P, Jones L, MacDonald ME, Long JD, Gusella JF

Genetic modifiers of Huntington disease differentially influence motor and cognitive domains
Am J Hum Genet
May 05, 2022
109 (5) :885-899
PMID: 35325614
PMCID: 9118113

Langbehn DR, Fine EM, Meier A, Hersch S

Utility of the Huntington's disease prognostic index score for a perimanifest clinical trial
Mov Disord
May 01, 2022
37 (5) :1040-1046
PMID: 35170086

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

A machine-learning derived Huntington's disease progression model: Insights for clinical trial design
Mov Disord
Mar 22, 2022
37 (3) :553-562
PMID: 34870344

Rodrigues FB, Owen G, Sathe S, Pak E, Kaur D, Ehrhardt AG, Lifer S, Townhill J, Schubert K, Leavitt BR, Guttman M, Bang J, Lewerenz J, Levey J, HDClarity Investigators, Sampaio C, Wild EJ

Safety and feasibility of research lumbar puncture in Huntington's disease: The HDClarity cohort and bioresource
J Huntingtons Dis
Mar 01, 2022
11 (1) :59-69
PMID: 35253773

Maltby J, Ovaska-Stafford N, Gunn S

The structure of mental health symptoms in Huntington's disease: Comparisons with healthy populations
J Clin Exp Neuropsychol
Dec 14, 2021
43 (7) :737-752
PMID: 34906020

Achenbach J, Saft C

Another perspective on Huntington's disease: Disease burden in family members and pre-manifest HD when compared to genotype-negative participants from Enroll-HD
Brain Sci
Dec 08, 2021
11 (12) :1621
PMID: 34942923
PMCID: 8699274

McDonnell EI, Wang Y, Goldman J, Marder K

Age of onset of Huntington's disease in carriers of reduced penetrance alleles
Mov Disord
Dec 01, 2021
36 (12) :2958-2961
PMID: 34536046
PMCID: 8688195

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
Nov 09, 2021
10 (4) :485-492
PMID: 34633327

Panegyres PK, Chen HY

Alzheimer's disease, Huntington's disease and cancer
J Clin Neurosci
Nov 01, 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
Oct 01, 2021
91 :13-18
PMID: 34450461

Crowell V, Houghton R, Tomar A, Fernandes T, Squitieri F

Modeling manifest Huntington's disease prevalence using diagnosed incidence and survival time
Neuroepidemiology
Sep 01, 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
Aug 31, 2021
7 (5) :e158
PMID: 34462049

Lunven M, Hamet Bagnou J, Youssov K, Gabadinho A, Fliss R, Montillot J, Audureau E, Bapst B, Morgado G, Reilmann R, Schubert R, Busse M, Craufurd D, Massart R, Rosser A, Bachoud-Lévi AC

Cognitive decline in Huntington's disease in the Digitalized Arithmetic Task (DAT)
PLoS One
Aug 23, 2021
16 (8) :e0253064
PMID: 34424902
PMCID: 8382187

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
Aug 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
Aug 01, 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
Jul 15, 2021
12
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
Jul 01, 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
Jun 09, 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
Jun 09, 2021
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
Neurology
May 11, 2021
96 (19) :e2407-e2413
PMID: 33692166

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
Apr 01, 2021
8 (3) :420-426
PMID: 33816672

Ogilvie AC, Gonzalez-Alegre P, Schultz JL

Diabetes mellitus is associated with an earlier age of onset of Huntington's disease
Mov Disord
Apr 01, 2021
36 (4) :1033-1034
PMID: 33368647

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
Mar 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
Mar 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
Mar 25, 2021
11 (4) :413
PMID: 33805940

McLaren B, Andrews SC, Glikmann-Johnston Y, Mercieca EC, Murray NWG, Loy C, Bellgrove MA, Stout JC

Feasibility and initial validation of 'HD-Mobile', a smartphone application for remote self-administration of performance-based cognitive measures in Huntington's disease
J Neurol
Feb 01, 2021
268 (2) :590-601
PMID: 32880724

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
Jan 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
Jan 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
Jan 01, 2021
99 (1) :133-142
PMID: 33020896

Langbehn DR, Hersch S

Clinical outcomes and selection criteria for prodromal Huntington's disease trials
Mov Disord
Dec 01, 2020
35 (12) :2193-2200
PMID: 32686867
PMCID: 7818458