HSG Research

Huntington Study Group Data & Findings

Site Survey: Patients Supported by HD Centers (2019)

During March 2019, the HSG surveyed their 86 United States based sites (HD Centers), with 63 responding to reveal an average of 135 HD patients per center. Thus:

  • A total of 11,633 HD patients are estimated to be served by the HSG’s 86 US locations.
  • If the numerator is the number of patients seeking care (11,633 in the United States) and the denominator is the approximately 30,000 patients in the US with symptomatic HD (based on the literature), then it appears that there are 70% of people with HD who evade care.

Huntington Study Group Research

Below is an interactive list of publications from PubMed.gov in which the Huntington Study Group is cited. Click on the hyperlink to access abstracts and papers.

Note: Some papers require a paid subscription to view.

  1. Jankovic, J, Tsui, J, Brin, MF. Treatment of cervical dystonia with Botox (onabotulinumtoxinA): Development, insights, and impact. Medicine (Baltimore). 2023;102 (S1):e32403. doi: 10.1097/MD.0000000000032403. PubMed PMID:37499081 PubMed Central PMC10374188.
  2. Estevez-Fraga, C, Tabrizi, SJ, Wild, EJ. Huntington's Disease Clinical Trials Corner: August 2023. J Huntingtons Dis. 2023;12 (2):169-185. doi: 10.3233/JHD-239001. PubMed PMID:37483021 PubMed Central PMC10473124.
  3. Martindale, JM, Sarva, H, Martino, D, Gilbert, DL, Ganos, C, Pringsheim, T et al.. Study protocol: A cross-sectional survey of clinicians to identify barriers to clinical practice guideline implementation in the assessment and treatment of persistent tic disorders. PLoS One. 2023;18 (7):e0288408. doi: 10.1371/journal.pone.0288408. PubMed PMID:37467237 PubMed Central PMC10355449.
  4. Graeber, J, Warmerdam, E, Aufenberg, S, Bull, C, Davies, K, Dixon, J et al.. Technology acceptance of digital devices for home use: Qualitative results of a mixed methods study. Digit Health. 2023;9 :20552076231181239. doi: 10.1177/20552076231181239. PubMed PMID:37361435 PubMed Central PMC10286539.
  5. Mammen, JR, Speck, RM, Stebbins, GM, Müller, MLTM, Yang, PT, Campbell, M et al.. Mapping Relevance of Digital Measures to Meaningful Symptoms and Impacts in Early Parkinson's Disease. J Parkinsons Dis. 2023;13 (4):589-607. doi: 10.3233/JPD-225122. PubMed PMID:37212073 PubMed Central PMC10357170.
  6. Mammen, JR, Speck, RM, Stebbins, GT, Müller, MLTM, Yang, PT, Campbell, M et al.. Relative Meaningfulness and Impacts of Symptoms in People with Early-Stage Parkinson's Disease. J Parkinsons Dis. 2023;13 (4):619-632. doi: 10.3233/JPD-225068. PubMed PMID:37212071 PubMed Central PMC10357209.
  7. Furr Stimming, E, Claassen, DO, Kayson, E, Goldstein, J, Mehanna, R, Zhang, H et al.. Safety and efficacy of valbenazine for the treatment of chorea associated with Huntington's disease (KINECT-HD): a phase 3, randomised, double-blind, placebo-controlled trial. Lancet Neurol. 2023;22 (6):494-504. doi: 10.1016/S1474-4422(23)00127-8. PubMed PMID:37210099 .
  8. Adams, JL, Kangarloo, T, Tracey, B, O'Donnell, P, Volfson, D, Latzman, RD et al.. Using a smartwatch and smartphone to assess early Parkinson's disease in the WATCH-PD study. NPJ Parkinsons Dis. 2023;9 (1):64. doi: 10.1038/s41531-023-00497-x. PubMed PMID:37069193 PubMed Central PMC10108794.
  9. Hauser, RA, Ondo, WG, Zhang, Y, Bowling, A, Navia, B, Pappert, E et al.. Dose Optimization of Apomorphine Sublingual Film for OFF Episodes in Parkinson's Disease: Is the Prophylactic Use of an Antiemetic Necessary?. J Parkinsons Dis. 2023;13 (3):403-414. doi: 10.3233/JPD-223537. PubMed PMID:36970914 PubMed Central PMC10200146.
  10. Sokol, LL, Troost, JP, Bega, D, Kluger, BM, Prigerson, HG, Nance, M et al.. Advance Care Planning and Health-Related Quality of Life in Huntington Disease: Results from a Multicenter National Study. Palliat Med Rep. 2023;4 (1):79-88. doi: 10.1089/pmr.2022.0034. PubMed PMID:36969738 PubMed Central PMC10036076.
  11. Dorsey, ER, Zafar, M, Lettenberger, SE, Pawlik, ME, Kinel, D, Frissen, M et al.. Trichloroethylene: An Invisible Cause of Parkinson's Disease?. J Parkinsons Dis. 2023;13 (2):203-218. doi: 10.3233/JPD-225047. PubMed PMID:36938742 PubMed Central PMC10041423.
  12. Estevez-Fraga, C, Elmalem, MS, Papoutsi, M, Durr, A, Rees, EM, Hobbs, NZ et al.. Progressive alterations in white matter microstructure across the timecourse of Huntington's disease. Brain Behav. 2023;13 (4):e2940. doi: 10.1002/brb3.2940. PubMed PMID:36917716 PubMed Central PMC10097137.
  13. Sokol, LL, Troost, JP, Bega, D, Paulsen, JS, Kluger, BM, Applebaum, AJ et al.. Death Anxiety in Huntington Disease: Longitudinal Heath-Related Quality-of-Life Outcomes. J Palliat Med. 2023;26 (7):907-914. doi: 10.1089/jpm.2022.0160. PubMed PMID:36607769 PubMed Central PMC10316526.
  14. Anderson, KE, Stevenson, M, Varghese, R, Hebron, ML, Koppel, E, McCartin, M et al.. Alteration of Autophagy and Glial Activity in Nilotinib-Treated Huntington's Disease Patients. Metabolites. 2022;12 (12):. doi: 10.3390/metabo12121225. PubMed PMID:36557263 PubMed Central PMC9781133.
  15. Frey, J, Black, KJ, Malaty, IA. TikTok Tourette's: Are We Witnessing a Rise in Functional Tic-Like Behavior Driven by Adolescent Social Media Use?. Psychol Res Behav Manag. 2022;15 :3575-3585. doi: 10.2147/PRBM.S359977. PubMed PMID:36505669 PubMed Central PMC9733629.
  16. Malaty, IA, Anderson, S, Bennett, SM, Budman, CL, Coffey, BJ, Coffman, KA et al.. Diagnosis and Management of Functional Tic-Like Phenomena. J Clin Med. 2022;11 (21):. doi: 10.3390/jcm11216470. PubMed PMID:36362696 PubMed Central PMC9656241.
  17. Seeberger, L, Corey-Bloom, J, O'Brien, M, Slowiejko, D, Schlang, D, Booth, MS et al.. Assessing the state of care for Huntington disease in the United States: Results from a survey of practices treating Huntington disease patients. Clin Park Relat Disord. 2022;7 :100165. doi: 10.1016/j.prdoa.2022.100165. PubMed PMID:36262527 PubMed Central PMC9574766.
  18. Frank, S, Testa, C, Edmondson, MC, Goldstein, J, Kayson, E, Leavitt, BR et al.. The Safety of Deutetrabenazine for Chorea in Huntington Disease: An Open-Label Extension Study. CNS Drugs. 2022;36 (11):1207-1216. doi: 10.1007/s40263-022-00956-8. PubMed PMID:36242718 PubMed Central PMC9653309.
  19. Gibson, JS, Flanigan, JL, Patrie, JT, Dalrymple, WA, Harrison, MB. Predictors of anxiety in Parkinson's disease: results from a 3-year longitudinal cohort study. Neurol Sci. 2023;44 (2):547-556. doi: 10.1007/s10072-022-06427-8. PubMed PMID:36216970 PubMed Central PMC9842547.
  20. Feigin, A, Evans, EE, Fisher, TL, Leonard, JE, Smith, ES, Reader, A et al.. Publisher Correction: Pepinemab antibody blockade of SEMA4D in early Huntington's disease: a randomized, placebo-controlled, phase 2 trial. Nat Med. 2022; :. doi: 10.1038/s41591-022-02070-0. PubMed PMID:36195687 .
  21. Lobanov, SV, McAllister, B, McDade-Kumar, M, Landwehrmeyer, GB, Orth, M, Rosser, AE et al.. Huntington's disease age at motor onset is modified by the tandem hexamer repeat in TCERG1. NPJ Genom Med. 2022;7 (1):53. doi: 10.1038/s41525-022-00317-w. PubMed PMID:36064847 PubMed Central PMC9445028.
  22. Yang, Y, Yuan, Y, Zhang, G, Wang, H, Chen, YC, Liu, Y et al.. Artificial intelligence-enabled detection and assessment of Parkinson's disease using nocturnal breathing signals. Nat Med. 2022;28 (10):2207-2215. doi: 10.1038/s41591-022-01932-x. PubMed PMID:35995955 PubMed Central PMC9556299.
  23. Feigin, A, Evans, EE, Fisher, TL, Leonard, JE, Smith, ES, Reader, A et al.. Pepinemab antibody blockade of SEMA4D in early Huntington's disease: a randomized, placebo-controlled, phase 2 trial. Nat Med. 2022;28 (10):2183-2193. doi: 10.1038/s41591-022-01919-8. PubMed PMID:35941373 PubMed Central PMC9361919.
  24. Roussos, G, Herrero, TR, Hill, DL, Dowling, AV, L T M Müller, M, Evers, LJW et al.. Identifying and characterising sources of variability in digital outcome measures in Parkinson's disease. NPJ Digit Med. 2022;5 (1):93. doi: 10.1038/s41746-022-00643-4. PubMed PMID:35840653 PubMed Central PMC9284971.
  25. Tabrizi, SJ, Estevez-Fraga, C, van Roon-Mom, WMC, Flower, MD, Scahill, RI, Wild, EJ et al.. Potential disease-modifying therapies for Huntington's disease: lessons learned and future opportunities. Lancet Neurol. 2022;21 (7):645-658. doi: 10.1016/S1474-4422(22)00121-1. PubMed PMID:35716694 PubMed Central PMC7613206.
  26. Krafft, GA, Jerecic, J, Siemers, E, Cline, EN. ACU193: An Immunotherapeutic Poised to Test the Amyloid β Oligomer Hypothesis of Alzheimer's Disease. Front Neurosci. 2022;16 :848215. doi: 10.3389/fnins.2022.848215. PubMed PMID:35557606 PubMed Central PMC9088393.
  27. Furby, H, Siadimas, A, Rutten-Jacobs, L, Rodrigues, FB, Wild, EJ. Natural history and burden of Huntington's disease in the UK: A population-based cohort study. Eur J Neurol. 2022;29 (8):2249-2257. doi: 10.1111/ene.15385. PubMed PMID:35514071 PubMed Central PMC9542098.
  28. McAllister, B, Donaldson, J, Binda, CS, Powell, S, Chughtai, U, Edwards, G et al.. Exome sequencing of individuals with Huntington's disease implicates FAN1 nuclease activity in slowing CAG expansion and disease onset. Nat Neurosci. 2022;25 (4):446-457. doi: 10.1038/s41593-022-01033-5. PubMed PMID:35379994 PubMed Central PMC8986535.
  29. Hill, DL, Stephenson, D, Brayanov, J, Claes, K, Badawy, R, Sardar, S et al.. Metadata Framework to Support Deployment of Digital Health Technologies in Clinical Trials in Parkinson's Disease. Sensors (Basel). 2022;22 (6):. doi: 10.3390/s22062136. PubMed PMID:35336307 PubMed Central PMC8954603.
  30. Page, A, Yung, N, Auinger, P, Venuto, C, Glidden, A, Macklin, E et al.. A Smartphone Application as an Exploratory Endpoint in a Phase 3 Parkinson's Disease Clinical Trial: A Pilot Study. Digit Biomark. 2022;6 (1):1-8. doi: 10.1159/000521232. PubMed PMID:35224425 PubMed Central PMC8832247.
  31. Langbehn, DR, Registry Investigators of the European Huntington Disease Network. Longer CAG repeat length is associated with shorter survival after disease onset in Huntington disease. Am J Hum Genet. 2022;109 (1):172-179. doi: 10.1016/j.ajhg.2021.12.002. PubMed PMID:34942093 PubMed Central PMC8764269.
  32. Adams, JL, Dinesh, K, Snyder, CW, Xiong, M, Tarolli, CG, Sharma, S et al.. A real-world study of wearable sensors in Parkinson's disease. NPJ Parkinsons Dis. 2021;7 (1):106. doi: 10.1038/s41531-021-00248-w. PubMed PMID:34845224 PubMed Central PMC8629990.
  33. Anon. Abstracts of the 28th Annual Meeting of the Huntington Study Group, November 4-6, 2021. J Huntingtons Dis. 2021;10 (s1):S1-S41. doi: 10.3233/JHD219003. PubMed PMID:34719506 .
  34. De Miranda, BR, Goldman, SM, Miller, GW, Greenamyre, JT, Dorsey, ER. Preventing Parkinson's Disease: An Environmental Agenda. J Parkinsons Dis. 2022;12 (1):45-68. doi: 10.3233/JPD-212922. PubMed PMID:34719434 PubMed Central PMC8842749.
  35. Coffey, B, Jankovic, J, Claassen, DO, Jimenez-Shahed, J, Gertz, BJ, Garofalo, EA et al.. Efficacy and Safety of Fixed-Dose Deutetrabenazine in Children and Adolescents for Tics Associated With Tourette Syndrome: A Randomized Clinical Trial. JAMA Netw Open. 2021;4 (10):e2129397. doi: 10.1001/jamanetworkopen.2021.29397. PubMed PMID:34661664 PubMed Central PMC8524312.
  36. Jankovic, J, Coffey, B, Claassen, DO, Jimenez-Shahed, J, Gertz, BJ, Garofalo, EA et al.. Safety and Efficacy of Flexible-Dose Deutetrabenazine in Children and Adolescents With Tourette Syndrome: A Randomized Clinical Trial. JAMA Netw Open. 2021;4 (10):e2128204. doi: 10.1001/jamanetworkopen.2021.28204. PubMed PMID:34609495 PubMed Central PMC8493441.
  37. Scorr, LM, Factor, SA, Parra, SP, Kaye, R, Paniello, RC, Norris, SA et al.. Oromandibular Dystonia: A Clinical Examination of 2,020 Cases. Front Neurol. 2021;12 :700714. doi: 10.3389/fneur.2021.700714. PubMed PMID:34603182 PubMed Central PMC8481678.
  38. Commiskey, P, Armstrong, AW, Coker, TR, Dorsey, ER, Fortney, JC, Gaines, KJ et al.. A Blueprint for the Conduct of Large, Multisite Trials in Telemedicine. J Med Internet Res. 2021;23 (9):e29511. doi: 10.2196/29511. PubMed PMID:34542417 PubMed Central PMC8491114.
  39. Myers, PS, Jackson, JJ, Clover, AK, Lessov-Schlaggar, CN, Foster, ER, Maiti, B et al.. Distinct progression patterns across Parkinson disease clinical subtypes. Ann Clin Transl Neurol. 2021;8 (8):1695-1708. doi: 10.1002/acn3.51436. PubMed PMID:34310084 PubMed Central PMC8351397.
  40. Sokol, LL, Troost, JP, Kluger, BM, Applebaum, AJ, Paulsen, JS, Bega, D et al.. Meaning and purpose in Huntington's disease: a longitudinal study of its impact on quality of life. Ann Clin Transl Neurol. 2021;8 (8):1668-1679. doi: 10.1002/acn3.51424. PubMed PMID:34288600 PubMed Central PMC8351386.
  41. Dorsey, ER. The new platforms of health care. NPJ Digit Med. 2021;4 (1):112. doi: 10.1038/s41746-021-00478-5. PubMed PMID:34267312 PubMed Central PMC8282598.
  42. Buchanan, DA, Goldstein, J, Pfalzer, AC, Lin, YC, Kang, H, Claassen, DO et al.. Empowering the Clinical Research Coordinator in Academic Medical Centers. Mayo Clin Proc Innov Qual Outcomes. 2021;5 (2):265-273. doi: 10.1016/j.mayocpiqo.2020.09.014. PubMed PMID:33997626 PubMed Central PMC8105545.
  43. Guttman, M, Pedrazzoli, M, Ponomareva, M, Pelletier, M, Townson, L, Mukelabai, K et al.. The Impact of Upcoming Treatments in Huntington's Disease: Resource Capacity Limitations and Access to Care Implications. J Huntingtons Dis. 2021;10 (2):303-311. doi: 10.3233/JHD-200462. PubMed PMID:33843690 PubMed Central PMC8293639.
  44. Sieberts, SK, Schaff, J, Duda, M, Pataki, BÁ, Sun, M, Snyder, P et al.. Crowdsourcing digital health measures to predict Parkinson's disease severity: the Parkinson's Disease Digital Biomarker DREAM Challenge. NPJ Digit Med. 2021;4 (1):53. doi: 10.1038/s41746-021-00414-7. PubMed PMID:33742069 PubMed Central PMC7979931.
  45. Tarakad, A, Jankovic, J. Recent advances in understanding and treatment of Parkinson's disease. Fac Rev. 2020;9 :6. doi: 10.12703/b/9-6. PubMed PMID:33659938 PubMed Central PMC7886054.
  46. Tanner, CM, Cummings, SR, Schwarzschild, MA, Brown, EG, Dorsey, ER, Espay, AJ et al.. The TOPAZ study: a home-based trial of zoledronic acid to prevent fractures in neurodegenerative parkinsonism. NPJ Parkinsons Dis. 2021;7 (1):16. doi: 10.1038/s41531-021-00162-1. PubMed PMID:33649343 PubMed Central PMC7921548.
  47. Junker, J, Berman, BD, Hall, J, Wahba, DW, Brandt, V, Perlmutter, JS et al.. Quality of life in isolated dystonia: non-motor manifestations matter. J Neurol Neurosurg Psychiatry. 2021; :. doi: 10.1136/jnnp-2020-325193. PubMed PMID:33563813 PubMed Central PMC8356023.
  48. Stephenson, D, Alexander, R, Aggarwal, V, Badawy, R, Bain, L, Bhatnagar, R et al.. Precompetitive Consensus Building to Facilitate the Use of Digital Health Technologies to Support Parkinson Disease Drug Development through Regulatory Science. Digit Biomark. 2020;4 (Suppl 1):28-49. doi: 10.1159/000512500. PubMed PMID:33442579 PubMed Central PMC7768153.
  49. Wang, A, Molho, E, Yang, Y, Pilitsis, J, Ramirez-Zamora, A. Dissociative Tremor Response with Pallidal Deep Brain Stimulation in Parkinson's Disease. Tremor Other Hyperkinet Mov (N Y). 2020;10 :53. doi: 10.5334/tohm.568. PubMed PMID:33362947 PubMed Central PMC7747761.
  50. Schneider, RB, Omberg, L, Macklin, EA, Daeschler, M, Bataille, L, Anthwal, S et al.. Design of a virtual longitudinal observational study in Parkinson's disease (AT-HOME PD). Ann Clin Transl Neurol. 2021;8 (2):308-320. doi: 10.1002/acn3.51236. PubMed PMID:33350601 PubMed Central PMC7886038.
  51. Anon. Correction to: Huntington Study Group Abstracts 2020. Neurotherapeutics. 2020;17 (Suppl 1):42. doi: 10.1007/s13311-020-00970-y. PubMed PMID:33200289 PubMed Central PMC7851221.
  52. GBD 2017 US Neurological Disorders Collaborators, Feigin, VL, Vos, T, Alahdab, F, Amit, AML, Bärnighausen, TW et al.. Burden of Neurological Disorders Across the US From 1990-2017: A Global Burden of Disease Study. JAMA Neurol. 2021;78 (2):165-176. doi: 10.1001/jamaneurol.2020.4152. PubMed PMID:33136137 PubMed Central PMC7607495.
  53. Anon. Huntington Study Group Abstracts 2020. Neurotherapeutics. 2020;17 (Suppl 1):1-41. doi: 10.1007/s13311-020-00945-z. PubMed PMID:33083994 PubMed Central PMC7574988.
  54. Campbell, MC, Myers, PS, Weigand, AJ, Foster, ER, Cairns, NJ, Jackson, JJ et al.. Parkinson disease clinical subtypes: key features & clinical milestones. Ann Clin Transl Neurol. 2020;7 (8):1272-1283. doi: 10.1002/acn3.51102. PubMed PMID:32602253 PubMed Central PMC7448190.
  55. Dorsey, ER, Omberg, L, Waddell, E, Adams, JL, Adams, R, Ali, MR et al.. Deep Phenotyping of Parkinson's Disease. J Parkinsons Dis. 2020;10 (3):855-873. doi: 10.3233/JPD-202006. PubMed PMID:32444562 PubMed Central PMC7458535.
  56. Bashir, HH, Jankovic, J. Treatment of Tardive Dyskinesia. Neurol Clin. 2020;38 (2):379-396. doi: 10.1016/j.ncl.2020.01.004. PubMed PMID:32279716 .
  57. Coran, P, Goldsack, JC, Grandinetti, CA, Bakker, JP, Bolognese, M, Dorsey, ER et al.. Advancing the Use of Mobile Technologies in Clinical Trials: Recommendations from the Clinical Trials Transformation Initiative. Digit Biomark. 2019;3 (3):145-154. doi: 10.1159/000503957. PubMed PMID:32095773 PubMed Central PMC7011727.
  58. Gordon, MF, Grachev, ID, Mazeh, I, Dolan, Y, Reilmann, R, Loupe, PS et al.. Quantification of Motor Function in Huntington Disease Patients Using Wearable Sensor Devices. Digit Biomark. 2019;3 (3):103-115. doi: 10.1159/000502136. PubMed PMID:32095771 PubMed Central PMC7011722.
  59. Kabelac, Z, Tarolli, CG, Snyder, C, Feldman, B, Glidden, A, Hsu, CY et al.. Passive Monitoring at Home: A Pilot Study in Parkinson Disease. Digit Biomark. 2019;3 (1):22-30. doi: 10.1159/000498922. PubMed PMID:32095766 PubMed Central PMC7015389.
  60. McGarry, A, McDermott, MP, Kieburtz, K, Peng, J, Cudkowicz, M, Huntington Study Group 2CARE Investigators and Coordinators et al.. Baseline Variables Associated with Functional Decline in 2CARE, A Randomized Clinical Trial in Huntington's Disease. J Huntingtons Dis. 2020;9 (1):47-58. doi: 10.3233/JHD-190391. PubMed PMID:31985471 PubMed Central PMC8216232.
  61. Tanner, CM, Pahwa, R, Hauser, RA, Oertel, WH, Isaacson, SH, Jankovic, J et al.. EASE LID 2: A 2-Year Open-Label Trial of Gocovri (Amantadine) Extended Release for Dyskinesia in Parkinson's Disease. J Parkinsons Dis. 2020;10 (2):543-558. doi: 10.3233/JPD-191841. PubMed PMID:31929122 PubMed Central PMC7242830.
  62. Anderson, KE, Griffin, J, Kinel, A, Shaikh, AR, Olofintuyi, T, Ramirez, S et al.. Quality of Care for Huntington's Disease in the United States: Findings from a National Survey of Patients and Caregivers. J Huntingtons Dis. 2019;8 (4):509-519. doi: 10.3233/JHD-190380. PubMed PMID:31594241 .
  63. Langbehn, DR, Stout, JC, Gregory, S, Mills, JA, Durr, A, Leavitt, BR et al.. Association of CAG Repeats With Long-term Progression in Huntington Disease. JAMA Neurol. 2019;76 (11):1375-1385. doi: 10.1001/jamaneurol.2019.2368. PubMed PMID:31403680 PubMed Central PMC6692683.
  64. Genetic Modifiers of Huntington’s Disease (GeM-HD) Consortium. Electronic address: gusella@helix.mgh.harvard.edu, Genetic Modifiers of Huntington’s Disease (GeM-HD) Consortium. CAG Repeat Not Polyglutamine Length Determines Timing of Huntington's Disease Onset. Cell. 2019;178 (4):887-900.e14. doi: 10.1016/j.cell.2019.06.036. PubMed PMID:31398342 PubMed Central PMC6700281.
  65. Kayson, E, Eberly, S, Anderson, KE, Marder, K, Shoulson, I, Oakes, D et al.. The Prospective Huntington At-Risk Observational Study (PHAROS): The Emotional Well-Being, Safety and Feasibility of Long-Term Research Participation. J Huntingtons Dis. 2019;8 (4):435-441. doi: 10.3233/JHD-190365. PubMed PMID:31381523 .
  66. van der Plas, E, Hamilton, MJ, Miller, JN, Koscik, TR, Long, JD, Cumming, S et al.. Brain Structural Features of Myotonic Dystrophy Type 1 and their Relationship with CTG Repeats. J Neuromuscul Dis. 2019;6 (3):321-332. doi: 10.3233/JND-190397. PubMed PMID:31306140 PubMed Central PMC7480174.
  67. 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. 2019;8 (3):323-332. doi: 10.3233/JHD-190345. PubMed PMID:31256145 PubMed Central PMC6718328.
  68. Shoulson, I, Eberly, S, Oakes, D, Kayson, E, Young, AB, PHAROS Investigators et al.. Phenotype-genotype discrepancies in the prospective Huntington at-risk observational study. Ann Clin Transl Neurol. 2019;6 (6):1046-1052. doi: 10.1002/acn3.781. PubMed PMID:31211168 PubMed Central PMC6562068.
  69. Klehmet, J, Beutner, S, Hoffmann, S, Dornauer, M, Paul, F, Reilmann, R et al.. Quantitative grip force assessment of muscular weakness in chronic inflammatory demyelinating polyneuropathy. BMC Neurol. 2019;19 (1):118. doi: 10.1186/s12883-019-1339-x. PubMed PMID:31176377 PubMed Central PMC6556046.
  70. Armstrong, MJ, Rastgardani, T, Gagliardi, AR, Marras, C. Barriers and facilitators of communication about off periods in Parkinson's disease: Qualitative analysis of patient, carepartner, and physician Interviews. PLoS One. 2019;14 (4):e0215384. doi: 10.1371/journal.pone.0215384. PubMed PMID:30998707 PubMed Central PMC6472878.
  71. Ciarochi, JA, Johnson, HJ, Calhoun, VD, Liu, J, Espinoza, FA, Bockholt, HJ et al.. Concurrent Cross-Sectional and Longitudinal Analyses of Multivariate White Matter Profiles and Clinical Functioning in Pre-Diagnosis Huntington Disease. J Huntingtons Dis. 2019;8 (2):199-219. doi: 10.3233/JHD-180332. PubMed PMID:30932891 .
  72. McGarry, A, McDermott, MP, Kieburtz, K, Fung, WLA, McCusker, E, Peng, J et al.. Risk factors for suicidality in Huntington disease: An analysis of the 2CARE clinical trial. Neurology. 2019;92 (14):e1643-e1651. doi: 10.1212/WNL.0000000000007244. PubMed PMID:30850442 PubMed Central PMC6448454.
  73. Braisch, U, Muche, R, Rothenbacher, D, Landwehrmeyer, GB, Long, JD, Orth, M et al.. Identification of symbol digit modality test score extremes in Huntington's disease. Am J Med Genet B Neuropsychiatr Genet. 2019;180 (3):232-245. doi: 10.1002/ajmg.b.32719. PubMed PMID:30788902 .
  74. Reilmann, R, McGarry, A, Grachev, ID, Savola, JM, Borowsky, B, Eyal, E et al.. Safety and efficacy of pridopidine in patients with Huntington's disease (PRIDE-HD): a phase 2, randomised, placebo-controlled, multicentre, dose-ranging study. Lancet Neurol. 2019;18 (2):165-176. doi: 10.1016/S1474-4422(18)30391-0. PubMed PMID:30563778 .
  75. 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. 2018;18 (1):138. doi: 10.1186/s12874-018-0592-9. PubMed PMID:30445915 PubMed Central PMC6240282.
  76. Niemann, N, Jankovic, J. Botulinum Toxin for the Treatment of Hand Tremor. Toxins (Basel). 2018;10 (7):. doi: 10.3390/toxins10070299. PubMed PMID:30029483 PubMed Central PMC6070882.
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