H · S · G
Huntington · Study · Group

ARTICLES

1. Huntington Study Group (Kieburtz K, primary author). The Unified Huntington's Disease Rating Scale: Reliability and Consistency. Mov Dis 1996;11:136-142.
2. Huntington Study Group (Marshall F, primary author).  Safety and tolerability of the free-radical scavenger OPC-14117 in Huntington’s disease.  Neurol 1998;50:1366-1373.
3. Marder K, Zhao H, Myers RH, Cudkowicz M, Kayson E, Kieburtz K, Orme C, Paulsen J, Penney JB, Siemers E, Shoulson I and the Huntington Study Group. Rate of functional decline in Huntington’s disease.  Neurol 2000;54:452-458.
4. The Huntington Study Group (Kieburtz K, primary author).  A randomized, placebo-controlled trial of coenzyme Q10 and remacemide in Huntington’s disease.  Neurol 2001;57:397-404.
5. Paulsen JS, Zhao H, Stout JC, Brinkman RR, Guttman M, Ross CA, Como P, Manning C, Hayden MR, Shoulson I, Huntington Study Group (Paulsen JS, primary author).  Clinical markers of early disease in persons near onset of Huntington’s disease.  Neurol 2001;57:658-662.
6. Wheelock VL, Tempkin T, Marder K, Nance M, Myers RH, Zhao H, Kayson E, Orme, Shoulson I and the Huntington Study Group.  Predictors of nursing home placement in Huntington’s disease.  Neurol 2003;60:998-1001.
7. Mahant N, McCusker EA, Byth K, Graham S, The Huntington Study Group.  Huntington’s disease.  Clinical correlates of disability and progression.  Neurol 2003;61:1085-1092.
8. Huntington Study Group (Marshall F, primary author).  Dosage effects of riluzole in Huntington’s disease: a multicenter placebo-controlled study.  Neurol 2003; 61:1551-1556.
9. Peterson DR, Zhao H; Eapen S.  Using local correlation in kernel-based smoothers for dependent data.  Biometrics 2003; 59:984-991.
10. Nehl C, Paulsen JS and the Huntington Study Group.  Cognitive and psychiatric aspects of Huntington disease contribute to functional capacity.  J Nerv Ment Dis 2004; 192:72-74.
    
11. Huntington Study Group (Cudkowicz M, primary author).  Minocycline safety and tolerability in Huntington's disease.  Neurol 2004;63:547-549.
12. Hamilton JM, Wolfson T, Peavy GM, Jacobson MW, Corey-Bloom J, Huntington Study Group.  Rate and correlates of weight change in Huntington’s disease.  J Neurol Neurosur Psych 2004:75(2) 209-212.
13. Hogarth P, Kayson E, Kieburtz K, Marder K, Oakes D, Rosas D, Shoulson I, Wexler NS, Young AB, Zhao H, and the Huntington Study Group.  Interrater Agreement in the Assessment of Motor Manifestations of Huntington’s Disease.  Mov Disord 2005;20(3):293-297.
14. Quaid KA, Swenson M, Sims S, and the PHAROS Investigators and Coordinators.  Qualitative interviews in a subset of PHAROS participants.  J Neurol Neurosur Psych 2005:76(suppl 4).
15. Huntington Study Group PHAROS Investigators (Quaid KA, primary author).  Attitudes towards genetic testing for Huntington’s disease in PHAROS participants.  J Neurol Neurosur Psych 2005:76(suppl 4).
16. Huntington Study Group PHAROS Investigators (Kayson EP, primary author).  Monitoring the mental health and well being of the prospective Huntington at risk observational study (PHAROS) cohort.  J Neurol Neurosur Psych 2005:76(suppl 4).
17. Paulsen JS, Nehl C, Ferneyhough Hoth K, Benjamin M, Conybeare R, McDowell B, Turner B, The Huntington Study Group.  Depression and Stages of Huntington’s Disease. J Neuropsychiatry Clin Neurosci Fall 2005; 17:4:496-502.
18. Paulsen JS, Hoth K, Nehl C, Stierman L, The Huntington Study Group. Critical Periods of Suicide Risk in Huntington’s Disease. Am J Psychiatry 2005;162:725-731.
19. Huntington Study Group, (Marshall F, primary author). Tetrabenazine as antichorea therapy in Huntington disease: A randomized controlled trial. Neurology 2006;66:366-372.
20. Paulsen JS, Hayden M, Stout JC, Langbehn DR, Aylward E, Ross CA, Guttman M, Nance M, Kieburtz K, Oakes D, Shoulson I, Kayson E, Johnson S, Penziner E and the Predict-HD Investigators of the Huntington Study Group. Preparing for Preventive Clinical Trials: The Predict-HD Study. Arch Neurol 2006;63:883-890.
21. The Huntington Study Group PHAROS Investigators (Shoulson I, primary author). At Risk for Huntington Disease: The PHAROS (Prospective Huntington At Risk Observational Study) Cohort Enrolled. Arch Neurol 2006;63:991-998.
22. Marshall FJ, Fahn S, Clarence-Smith K (Reply from the authors). Tetrabenazine as antichorea therapy in Huntington disease: A randomized controlled trial. Neurology 2007;68:797.
23. Solomon AC, Stout JC, Johnson SA, Langbehn DR, Aylward EH, Brandt J, Ross CA, Beglinger L, Hayden MR, Kieburtz K, Kayson E, Julian-Baros E, Duff K, Guttman M, Nance M, Oakes D, Shoulson I, Penziner E, Paulsen JS and the Predict-HD investigators of the Huntington’s Study Group. Verbal episodic memory declines prior to diagnosis in Huntington’s disease. Neuropsychologia 2007;45:1767-1776.
24. Frank S, Ondo W, Fahn S, Hunter C, Oakes D, Plumb S, Marshall F, Shoulson I, Eberly S, Walker F, Factor S, Hunt V, Shinaman A, Jankovic J. A study of chorea after tetrabenazine withdrawal in patients with Huntington’s disease.  Clinical Neuropharmacology (in press).
25. Langbehn DR, Paulsen JS, The Huntington Study Group.  Predictors of diagnosis in Huntington disease. Neurology 2007;68:1710-1717.

ACKNOWLEDGEMENTS TO THE HUNTINGTON STUDY GROUP

1. Peterson DR, Zhao H, Eapan S. Using local correlation in kernel-based smoothers for dependent data. Biometrics 2003;59:984-991.

ABSTRACTS

1. Huntington Study Group (Como P, primary author). Internal validity and consistency of the Unified Huntington's Disease Rating Scale (UHDRS) (abstract), Neurol 45(Suppl 4) April 1995, p. A254.

2. Huntington Study Group (Marshall FJ, primary author).  Inter-laboratory variability of (CAG)n determinations in Huntington's disease (HD).  Neurol 1996;46:A258.

3. Huntington Study Group (Paulsen JS, primary author).  The clinical utility of the Stroop Test A in a multicenter study of Huntington's disease.  J Intl Neuropsychol Society 1996;2:35.

4. Huntington Study Group (Bylsma FW, primary author).  Noncognitive symptoms in Huntington's disease.  J Intl Neuropsychol Society 1996;2:35.

5. Huntington Study Group (Como P, primary author).  Neuropsychological assessment in multicenter clinical trials.  J Intl Neuropsychol Society 1996;2:44.

6. Huntington Study Group (Marshall FJ, primary author).  Safety and tolerability of the free-radical scavenger OPC-14117 in Huntington's disease.  Mov Disord 1996;11:59.

7. Marshall FJ, Taylor S and the Huntington Study Group. Aggression and irritability in Huntington disease: a survey of treatment patterns.  Neurol 1997;48:A49.

8. Parkinson Study Group, Huntington Study Group and Movement Disorders Society. Twelfth Annual Symposia on Etiology, Pathogenesis, and Treatment of Parkinson’s Disease and Etiology, Pathogenesis and Treatment of Huntington’s Disease.  Mov Disord 1998;13:858-863.

9. Hogarth P, Rosas D, Zhao H, Kayson E, Oakes D, Kieburtz K, Young AB, Wexler NS, Shoulson I and the Huntington Study Group. A study of inter-rater reliability of motor diagnosis of Huntington’s disease. Mov Dis 1999;14:901.

10. Parkinson Study Group, Huntington Study Group and Movement Disorders Society. Thirteenth Annual Symposium on Etiology, Pathogenesis and Treatment of Parkinson's Disease and Other Movement Disorders.  Mov Disord 1999;14:898-909.

11. Volk M, Marshall M, McDermott M, Kieburtz K and the Huntington Study Group. Electrocardiographic manifestations of Huntington’s disease.  Mov Disord 1999;14:902.

12. Hogarth P and the Huntington Study Group. A study of the feasibility of clinical research in the Huntington’s at-risk population.  18th International Meeting of the World Federation of Neurology Research Group on Huntington Disease, August 28-31, 1999, Program Abstracts: Huntington Disease/The Hague, The Netherlands, pp.105.

13. Wheelock V, Tempkin T, Marder K, Nance M, Myers R, Zhao H and the Huntington Study Group. Do Motor, Behavioral, or Psychiatric Correlates Predict the Need for Institutional Care in Patients with Huntington’s Disease? Ann Neurol 2000;48:467.

14. Hogarth P and the Huntington Study Group.  Gender disparity in study participation among individuals at risk for Huntington’s disease.  Mov Disord 2000;15:1042.

15. Parkinson Study Group, Huntington Study Group and Movement Disorders Society. Fourteenth Annual Symposium on Etiology, Pathogenesis and Treatment of Parkinson’s Disease and Other Movement Disorders. Mov Disord 2000;15:1038-1048.

16. Huntington Study Group (K Kieburtz, presenter). Placebo-Controlled Trial of Creatine in Huntington’s Disease.  Neurol 2001;56:A386.

17. Peavy, Gm, Wilson L, Jacobsen MW, Hamilton JM, Jerkins SM, Corey-Bloom J, Psychiatric symptoms as a function of Huntington’s disease diagnosis, Neurol, 2001;56(Suppl 3):A22.

18. Huntington Study Group (FJ Marshall, presenter).  Riluzole dosing in Huntington's Disease (RID-HD):  Results of an 8-week double-blind, placebo-controlled, multi-center study by the Huntington Study Group. Proceedings of the 19th International Meeting of the World Federation of Neurology Research Group on Huntington’s Disease, August 25-28, 2001, Copenhagen, Denmark.  Publication of the Panum Institute, p. 29-30, 2001.

19. Huntington Study Group (E Kayson, presenter). Preliminary report of the safety and feasibility of a controlled observational study of adults at risk for Huntington’s disease (PHAROS). Proceedings of the 19th International Meeting of the World Federation of Neurology Research Group on Huntington’s Disease, August 25-28, 2001, Copenhagen, Denmark. Publication of the Panum Institute, p. 30, 2001.

20. Huntington Study Group (MA Shinaman, presenter). Willingness to consent for future genetic testing by individuals at risk for or with Huntington’s disease: A preliminary report. Mov Dis 2001;16:987.

21. Parkinson Study Group, Huntington Study Group and Movement Disorders Society. Fifteenth Annual Symposium on Etiology, Pathogenesis and Treatment of Parkinson’s Disease and Other Movement Disorders. Mov Disord 2001;15:981-994.

22. Huntington Study Group (FJ Marshall, presenter).  The frequency and severity of disruptive behavior and irritability in Huntington’s disease.  Mov Disord 2001;16:S45.

23. Huntington Study Group (JM Hamilton, presenter). Correlates of Weight Change in Huntington’s Disease. Neurol 2002;58(Suppl 3):A309, abstract #P04.130.

24. Huntington Study Group (N Mahant, presenter).  Huntington Disease: Does Mode of Onset Determine Disease Course. Neurol 2002;58 (Suppl 3):A333, abstract #S46.001.

25. Huntington Study Group (K Marder, presenter) Longitudinal Evaluation of Motor Signs in Huntington’s Disease. Neurol 2002;58(Suppl 3):A333, abstract #S46.002.

26. Huntington Study Group (E Kayson, presenter) Safety and Feasibility of the Prospective Huntington at Risk Observational Study (PHAROS): A Preliminary Report. Neurol 2002;58(Suppl 3):A334-335, abstract #S46.005.

27. Parkinson Study Group, Huntington Study Group and Movement Disorders Society. Sixteenth Annual Symposia on Etiology, Pathogenesis and Treatment of Parkinson’s Disease and Other Movement Disorders. Mov Disord 2002;17:1103-1114.

28. Djousse L. Knowlton B. Cupples LA. Marder K. Shoulson I. Myers RH. Weight loss in early stage of Huntington's disease. Neurol 59:1325-30, 2002.

29. Huntington Study Group (M. Cudkowicz, primary author).  Minocycline safety and tolerability in Huntington’s disease.  Mov Disord 2003;18:1084.

30. Parkinson Study Group, Huntington Study Group and Movement Disorders Society.  Seventeenth Annual Symposia on Etiology, Pathogenesis and Treatment of Parkinson’s Disease and Other Movement Disorders.  Mov Disord 2003;18:1082-1095.

31. Huntington Study Group/PHAROS Investigators (E. Kayson, primary author).  Safety and feasibility of the Prospective Huntington At Risk Observational Study (PHAROS):  A progress report.  Accepted for presentation at the World Congress on Huntington’s Disease, August 16-19, 2003, Toronto, Ontario Canada and published in the program booklet of World Congress on Huntington’s Disease, Abstract #70, page 70, 2003.

32. Huntington Study Group/PHAROS Investigators (K. Biglan, primary author).  Emerging cohort characteristics in the Prospective Huntington At Risk Observation Study (PHAROS).  Accepted for presentation at the World Congress on Huntington’s Disease, August 16-19, 2003, Toronto, Ontario Canada and published in the program booklet of World Congress on Huntington’s Disease, Abstract #81, page 73, 2003.

33. Huntington Study Group/Predict-HD Investigators (J.S. Paulsen, primary author).  Initial baseline characteristics in the Predict-HD (Neurobiological Predictors of HD) Study.  Accepted for presentation at the World Congress on Huntington’s Disease, August 16-19, 2003, Toronto, Ontario Canada and published in the program booklet of World Congress on Huntington’s Disease, Abstract #89, page 75, 2003.

34. Frank SA, Marshall F, Plumb S, Oakes D, Shoulson I, Kieburtz K, CARE-HD Investigators of the Huntington Study Group.  Functional decline due to chorea in Huntington’s disease.  Neurol 2004;62(Suppl 5):A204.

35. Ross CA, Aylward EH, Stout JC, Biglan KM, Hayden MR, Shoulson I, Langbehn DR, Paulsen JS, The Predict-HD Investigators of the HSG.  Clinical and radiographic features among presymptomatic individuals carrying an expanded CAG repeat in the Huntington’s disease gene:  Analysis of baseline characteristics of the PREDICT-HD Cohort.  Neurol 2004;62(Suppl 5):A357.

36. Kayson EP, Huntington Study Group/PHAROS Investigators.  The welfare of research participants in the Prospective Huntington At-Risk Observational Study (PHAROS).  Mov Disord 2004;19(Suppl 9):S352.

37. Huntington Study Group (F.J. Marshall, presenter).  A Randomized, Double-Blind, Placebo-Controlled Study of Tetrabenazine in Patients with Huntington’s Disease.  Mov Disord 2004;19:1122.

38. Kayson E, Darnell M, Weber J, Biglan K, Shoulson I, and the Huntington Study Group PHAROS Investigators.  Depression and Suicidality at Baseline in the Prospective Huntington At Risk Observational Study (PHAROS).  Mov Disord 2004;19:1128.

39. Ravina B, DiProspero N, Fagan SC, Fischbeck K, Harrison M, Hart R, Heemskerk J, Murphy D, Profenno L, Blumenstein R, Signer ER, Taylor JP, Tretheway JA, Hovinga CA.  Systematic Evaluation of Treatments for Huntington’s Disease (SET-HD):  An Interim Report.  Accepted for presentation at the Hereditary Disease Foundation Summer Symposia (Cambridge, MA, August 2004).

40. Briner L, Bain L, Blumenstein R, Kieburtz K, Shinaman A, Shoulson I.  The Huntington Project:  Collaborative Huntington’s Disease Clinical Research.  Accepted for presentation at the Hereditary Disease Foundation Summer Symposia (Cambridge, MA, August 2004).

41. Huntington Study Group PHAROS Investigators (Kayson EP, presenter).  The Features and Well Being of the Prospective Huntington At Risk Observational Study (PHAROS) Cohort.  Accepted for presentation at the Hereditary Disease Foundation Summer Symposia (Cambridge, MA, August 2004).

42. Huntington Study Group (HSG) PHAROS Investigators (Shinaman A,     presenter).  Willingness to Consent for Future Use of Biological Specimens in the Prospective Huntington At Risk Observational Study (PHAROS).  Accepted for presentation at the Hereditary Disease Foundation Summer Symposia (Cambridge, MA, August 2004).

43. Shinaman MA, Gusella J, Foroud T, Gray J, Conneally M, Shoulson I, O’Donoghue K, Kayson E, Blumenstein R, Harrison M, Nance M, Suchowersky O, Tempkin T.  Cooperative Huntington’s Observational Research Trial (COHORT):  An Initial Report.  Accepted for presentation at the Hereditary Disease Foundation Summer Symposia (Cambridge, MA, August 2004).

44. Elise Kayson, Elaine Julian-Baros, Christine Weaver, Aileen Shinaman,  Connie Orme, Joseph Weber, Susan Daigneault, Anne B. Young, Ira Shoulson and the Huntington Study Group (HSG) PHAROS Investigators.  Recruitment Strategies for the Prospective Huntington At Risk Observational Study (PHAROS). Published in the program booklet of Huntington Study Group 12th Annual Meeting 2004, Abstract # 8.

45. Parkinson Study Group, Huntington Study Group and Movement Disorders Society.  Eighteenth Annual Symposia on Etiology, Pathogenesis and Treatment of Parkinson’s Disease and Other Movement Disorders.  Mov Disord 2004;19:1118-1134.

46. Kevin M. Biglan and PHAROS Investigators. Baseline Characteristics of the Prospective Huntington at Risk Observational Study Cohort.  Annals Neuro 2004;56(suppl 8):S24

47. Hogarth P, Kayson E, Kieburtz K, Marder K, Oakes D, Rosas D, Shoulson I, Wexler NS, Young AB, Zhao H, the US-Venezuela Huntington’s Disease Collaborative Research Group; and the Huntington Study Group.  Inter-Rater Agreement in the Assessment of the Motor Manifestations of Huntington’s Disease.  Mov Disord 2005;20:298-305.

48. Frank S, Ondo W, Hunter C, Marshall F, Walker F, Eberly S, Factor S, Fahn S, Hunt V, Oakes D, Plumb S, Shinaman A, Shoulson I, Zhao H, Jankovic J. A randomized, double-blind, placebo-controlled, staggered withdrawal study in patients with Huntington’s disease treated with tetrabenazine. Mov Disord 2005;20(9):1244.

49. Parkinson Study Group, Huntington Study Group and Movement Disorders Society. Nineteenth Annual Symposia on Etiology, Pathogenesis and Treatment of Parkinson’s Disease and Other Movement Disorders.  Mov Disord 2005;20(9):1235-1249.

50. Hyson, C. for the Huntington Study Group. Pre-2CARE: a dosage ranging trial of coenzyme Q10 in Huntington’s Disease and in healthy subjects. Hereditary Diseases Foundation Annual Symposium, August 2004.


51. Hyson HC & the Huntington Study Group, QuBE: A bioequivalence study of coenzyme Q10 in healthy subjects. Movement Disorders Society Meeting. 2005.

52. Marshall FJ, Eberly S, Frank S, Oakes D and the Huntington Study Group/TETRA-HD Investigators. Predictors of response to tetrabenazine in Huntington’s disease. Mov Disord 2006;21(9):1547.

53. Huntington Study Group PHAROS Investigators (Shinaman A, presenter). Willingness to consent for future use of DNA collected in the Prospective Huntington At Risk Observational Study (PHAROS). Mov Disord 2006;21(9):1555-1556.

54. Frank SA on behalf of the Huntington Study Group TETRA-HD Investigators. An open label study of tetrabenazine as anti-chorea therapy in Huntington disease. Neuro 2007;68(Suppl 1):A365.

55. Marder K and the Huntington Study Group PHAROS Investigators. Cross-sectional assessment of diet in individuals at risk for Huntington’s disease (PHAROS). Neuro 2007;68(Suppl 1):A230.

56. Paulsen JS, Langbehn DR, Wang C, Duff K, Beglinger LJ, Carlozzi NE Queller S, Stout JC, and the PREDICT-HD Investigators of the Huntington Study Group. Cognitive Predictors of HD Diagnosis in PREDICT-HD: A Prospective Study of Cognition in Phenoconversion.  Published in the program booklet of World Congress on Huntington’s Disease 2007, Plenary Session III: S09.

57. Stout JC, Carlozzi NE, Queller S, Whitlock KB, Langbehn DR, Duff K, Beglinger LJ, Ross CA, Paulsen JS, and the PREDICT-HD Investigators of the Huntington Study Group.  Longitudinal Assessment of Pre-HD from the PREDICT-HD COHORT: Preparation for Clinical Trails.  A Prospective Study of Cognition in Phenoconversion.  Published in the program booklet of World Congress on Huntington’s Disease 2007, Plenary Session III: S10.

58. Biglan KM, Dorsey ER, Kieburtz K, Ross CA, Hersch S, Shoulson I, Matson W, and the Pre2CARE Investigators of the Huntington Study Group. Serum 80HdG Levels in Manifest Huntington’s Disease and Healthy Controls Treated with Coenzyme Q10.  Published in the program booklet of World Congress on Huntington’s Disease 2007, Plenary Session III: S16.

59. Duff K, Paulsen JS, Beglinger LJ, Stout JC, Carlozzi NE, Queller S, Langbehn DR, Wang C, and the PREDICT-HD Investigators of the Huntington Study Group.  Predicting Depression in Pre-HD.  Published in the program booklet of World Congress on Huntington’s Disease 2007, Clinical Session I: S28.

60. Beglinger LJ, Paulsen JS, Duff K, Wang C, Langbehn DR, Watson D, Stout JC, Carlozzi NE, Queller S, and the PREDICT-HD Investigators of the Huntington Study Group.  Obsessive and Compulsive Symptoms in Pre-Diagnosed Huntington’s Disease.  Published in the program booklet of World Congress on Huntington’s Disease 2007, Clinical Session I: S29.

61. Oster E, Dorsey ER, Bausch J, Shinaman A, Kayson E, Oakes D, Shoulson I, Quaid K, and the Huntington Study Group PHAROS Investigators.  Published in the program booklet of World Congress on Huntington’s Disease 2007, Clinical Session III: S40.

62. Langbehn DR, Paulsen JS, and the PREDICT-HD investigators of the Huntington Study Group.  Prospective Validation of CAG-Based Age of Diagnosis in Huntington’s Disease. Published in the program booklet of World Congress on Huntington’s Disease 2007, Clinical Session III: S46.

63. Dorsey ER on behalf of the Huntington Study Group TREND-HD Investigators.  A Randomized, Controlled Trial of Ethyl-EPA for the Treatment of Huntington Disease – Preliminary Results. Published in the program booklet of World Congress on Huntington’s Disease 2007, Clinical Session IV: S79.

64. Oster E, Dorsey ER, Bausch J, Shinaman A, Kayson E, Oakes D, Shoulson I, Quaid K, and the Huntington Study Group PHAROS Investigators.  Factors Associated with the Decision to Pursue Genetic Testing in Individuals at Risk for Huntington’s Disease.  Published in the program booklet of World Congress on Huntington’s Disease 2007, Abstract P52.

65. Langbehn DR, Paulsen JS, and the PREDICT-HD Investigators of the Huntington Study Group.  Prospective Validation of CAG-Based Age of Diagnosis in Huntington’s Disease.  Published in the program booklet of World Congress on Huntington’s Disease 2007, Abstract P62.

66. Stout JC, Carlozzi NE, Queller S, Whitlock KB, Langbehn DR, Duff K, Beglinger LJ, Ross CA, Paulsen JS, and the PREDICT-HD Investigators of the Huntington Study Group.  Longitudinal Assessment of Pre-HD From the PREDCIT-HD COHORT: Preparation for Clinical Trials.  Published in the program booklet of World Congress on Huntington’s Disease 2007, Abstract P63.

67. Paulsen JS, Langbehn DR, Wang C, Duff K, Beglinger LJ, Carlozzi NE, Queller S, Stout JC, and the PREDICT-HD Investigators of the Huntington Study Group.  Cognitive Predictors of HD Diagnosis in PREDICT-HD: A Prospective Study of Cognition in Phenoconversion.  Published in the program booklet of World Congress on Huntington’s Disease 2007, Abstract P86.

68. Carlozzi NE, Stout JC, Queller S, Whitlock KB, Langbehn DR, Beglinger LJ, Duff K, Ross CA, Paulsen JS, and the PREDICT-HD Investigators of the Huntington Study Group.  Cross-Sectional Neurocognitive Measurement of Pre-HD Individuals in PREDICT-HD.  Published in the program booklet of World Congress on Huntington’s Disease 2007, Abstract P87.

69. Duff K, Paulsen JS, Beglinger LJ, Stout JC, Carlozzi NE, Queller S, Langbehn DR, Wang C, and the PREDICT-HD Investigators of the Huntington Study Group.  Published in the program booklet of World Congress on Huntington’s Disease 2007, Abstract P106.

70. Beglinger LJ, Paulsen JS, Duff K, Wang C, Langbehn DR, Watson D, Stout JC, Carlozzi NE, Queller S, and the PREDICT-HD Investigators of the Huntington Study Group.  Obsessive and Compulsive Symptoms in Pre-Diagnosed Huntington’s Disease. Published in the program booklet of World Congress on Huntington’s Disease 2007, Abstract P108.

71. Biglan KM, Dorsey ER, Kieburtz K, Ross CA, Hersch S, Shoulson I, Matson W, and the Pre2CARE Investigators of the Huntington Study Group.  Serum 80HdG Levels in Manifest Huntington’s Disease and Healthy Controls Treated with Coenzyme Q10.  Published in the program booklet of World Congress on Huntington’s Disease 2007, Abstract P148.

72. Dorsey ER on behalf of the Huntington Study Group TREND-HD Investigators.  A Randomized, Controlled Trial of Ethyl-EPA for the Treatment of Huntington’s Disease – Preliminary Results.  Published in the program booklet of World Congress on Huntington’s Disease 2007, Abstract P150.

73. Biglan KM, Ross CA, Langbehn DR, Aylward E, Stout JC, Queller S, Carlozzi N, Duff K, Beglinger LJ, Paulsen JS, and the PREDICT-HD Investigators of the Huntington Study Group.  Subtle Motor Abnormalities in Pre-Manifest HD Are Associated with Gene Status, Probability of Disease Onset, and Striatal Atrophy.  Published in the program booklet of the Inaugural Huntington Disease Clinical Research Symposium 2007, Platform Presentation.

74. Hersch S for the Huntington Study Group PHEND Investigators.  PHEND-HD: A Safety, Tolerability, and Biomarker Study of Phenylbutyrate in Symptomatic HD.  Published in the program booklet of the Inaugural Huntington Disease Clinical Research Symposium 2007, Platform Presentation.

75. Dorsey ER for the Huntington Study Group TREND-HD Investigators. A Randomized, Controlled Trial of Ethyl-EPA for the Treatment of Huntington Disease – 12-Month Results.  Published in the program booklet of the Inaugural Huntington Disease Clinical Research Symposium 2007, Platform Presentation.

76. Chirieac MC, Shinaman A, Shoulson I, and the Huntington Study Group COHORT Investigators.  COHORT: A Snapshot of Baseline Characteristics.  Published in the program booklet of the Inaugural Huntington Disease Clinical Research Symposium 2007, P6.

77. Kayson EP and the Huntington Study Group PHAROS Investigators.  Five Years of Monitoring the Safety and Feasibility of PHAROS (Prospective Huntington At Risk Observational Study).  Published in the program booklet of the Inaugural Huntington Disease Clinical Research Symposium 2007, P8.

78. Oster E, Dorsey ER, Bausch J, Shinaman A, Kayson E, Oakes D, Shoulson I, Quaid K, and the Huntington Study Group PHAROS Investigators.  Influence of Insurance on the Decision to Pursue Genetic Testing in Individuals at Risk for Huntington Disease. Published in the program booklet of the Inaugural Huntington Disease Clinical Research Symposium 2007, P16.

79. Quaid K, Sims S, Swenson M, Harrison J, Moskowitz C, Stepanov N, Suter G, Westphal B, and the Huntington Study Group PHAROS Investigators.  Living at Risk: Concealing Risk and Preserving Hope in Huntington Disease.  Published in the program booklet of the Inaugural Huntington Disease Clinical Research Symposium 2007, P17.

80. Johnson SA, Stout JC, Queller S, Whitlock K, Langbehn D, Aylward E, Paulsen J, and the PREDICT-HD Investigators of the Huntington Study Group.  Longitudinal Decline in Negative Emotion Recognition Prior to Diagnosis in Huntington’s Disease.  Published in the program booklet of the Inaugural Huntington Disease Clinical Research Symposium 2007, P19.

81. Nopoulos P, Paulsen J, Beglinger L, Johnson H, Magnotta V, Pierson R, Langbehn D, and the PREDICT-HD Investigators and Coordinators of the Huntington Study Group.  Abnormal Structure of Cerebral White and Cortical Gray Matter in Preclinical Huntington’s Disease. Published in the program booklet of the Inaugural Huntington Disease Clinical Research Symposium 2007, P20.

82. Whitlock KB, Stout JC, Queller S, Langbehn DR, Carlozzi NE, Paulsen JS, and the PREDICT-HD  Investigators of the Huntington Study Group.  Item Reduction of the University of Pennsylvania Smell ID Test: Preparation for Clinical Trials in pre-HD using the Predict HD Cohort.  Published in the program booklet of the Inaugural Huntington Disease Clinical Research Symposium 2007, P28.

83. Stout JC, Carlozzi NE, Queller S, Whitlock KB, Johnson SA, Langbehn DR, Beglinger LJ, Duff K, Paulsen JS, and the PREDICT-HD Investigators of the Huntington Study Group.  Candidates for Neurocognitive Markers in PRE-HD: Longitudinal Assessment from the PREDICT-HD COHORT.  Published in the program booklet of the Inaugural Huntington Disease Clinical Research Symposium 2007, P29.

84. Stout JC, Queller S, Whitlock KB, Carlozzi NE, Langbehn DR, Paulsen JS, and the PREDICT-HD Investigators of the Huntington Study Group.  Controlling for Individual Differences in Neurocognitive Markers in Pre-Diagnosed HD in the Predict-HD Cohort.  Published in the program booklet of the Inaugural Huntington Disease Clinical Research Symposium 2007, P31.

85. Dorsey ER, Beck C, Adams M, Chadwick G, de Blieck EA, McCallum C, Deuel L, Clarke A, Stewart R, Shoulson I, and the Huntington Study Group TREND-HD Investigators.  Communicating Findings to Research Participants: Preliminary Results from the TREND-HD Study.  Published in the program booklet of the Inaugural Huntington Disease Clinical Research Symposium 2007, Late-Breaking Research P35.

REPORTS, RELEASES AND POSITION PAPERS

1. Huntington Study Group To Plan and Carry Out Clinical Trials (November 15, 1993).

2. Huntington Study Group Ethical and Conflict-of-Interest Guidelines (June, 1994).

3. The Huntington Study Group Moves Forward to Plan and Conduct Clinical Research Trials (August, 1994).

4. HSG Progress Report, 1993-94 (December, 1994).

5. HSG Policy on Non-Disclosure of CAG Trinucleotide Repeat Length (CAGn) Genetic (DNA) Information (February 10, 1995).

6. HSG Accomplishments and Goals, 1995-1996, 1996-1997, 1997-1998, 1998-1999.

7. Constitution and Bylaws of the HSG (September 13, 1996 - last update was November 2003).

8. HSG Position Statement On Experimental Surgical Treatments In HD (January 10, 1997) K. Kieburtz, K. Shannon for the Surgical Approaches Working Group and the HSG Executive Committee.

9. HSG Policy for Storage and Use of Biological Human Research Samples (April 24, 2001).

10. HSG Policy Statement on Publication and Conflict of Interest Pertaining to Clinical Research Involving Persons with Huntington’s Disease (HD) (October 24, 2002).


REPORTS SUPPORTED BY THE HUNTINGTON STUDY GROUP


1. Ordway JM, Tallaksen-Greene S, Gutekunst CA, Bernstein EM, Cearley JA, Wiener HW, Dure LS, Lindsey R, Hersch SM, Jope RS, Albin RL, Detloff PJ. Ectopically expressed CAG repeats cause intranuclear inclusions and a progressive late onset neurological phenotype in the mouse. Cell 1997; 91:753-763.