1. Evidence-Based Medicine: How to Practice and Teach EBM. New York: Churchill Livingstone, 1997.
2. Initial National Priorities for Comparative Effectiveness Research. Washington, DC: The National Academies Press, 2009.
4. , Patient-centered comparative effectiveness research: essential for high-quality care. Arch Intern Med 2010; 170:403–4.
5. , Quality of life: listen to, change, or shoot the messenger? Neurology 2007; 68:1095–6.
6. , , , , Measurements in Clinial Trials: Choosing the Right Approach. In Spilker B, ed. Philadelphia: Lippincott-Raven, 1996:41–8.
7. , , , Doctors and patients don't agree: cross sectional study of patients’ and doctors’ perceptions and assessments of disability in multiple sclerosis. BMJ (Clin Res Ed) 1997; 314:1580–3.
8. , , , Inpatient rehabilitation in multiple sclerosis: do the benefits carry over into the community? Neurology 1999; 52:50–6.
9. , , , et al. Fatigue and Multiple Sclerosis: Evidence-Based Management Strategies for Fatigue in Multiple Sclerosis. Washington, DC: Paralyzed Veterans of America, 1998.
, , Measuring health-related quality of life
. Ann Intern Med 1993
11. , , The general heath policy model: an integrated approach. In Spilker B, ed. Quality of Life and Pharmacoeconomics in Clinical Trials. Philadelphia: Lippincott Raven, 1996:309–22.
12. Comparing treatment outcomes using utility assessment for health-related quality of life. Oncology 2003; 17:1687– 93.
13.Office of Communications DoDI, Center for Drug Evaluation and Research Food and Drug Administration. Guidance for Industry Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims. Silver Spring, MD: Food and Drug Administration, December, 2009.
14. , , The mathematical relationship among different forms of responsiveness coefficients. Qual Life Res 2007; 16:815–22.
15. , , , et al. Responsiveness of patient reported outcome measures in multiple sclerosis relapses: the REMS study. J Neurol Neurosurg Psychiatr 2009; 80:1023–8.
16. Evidence for immunopathogenesis. In: , ed. Handbook of Multiple Sclerosis. New York: Marcel Dekker, 1990;101–27.
17. International Classification of Impairments, Disabilities and Handicaps (ICIDH): A Manual for Classification. Geneva: WHO, 1980.
18. , , , Spilker. Quality of life studies: definitions and conceptual issues. In Quality of Life and Pharmacoeconomics in Clinical Trials. Philadelphia: Lippincott-Raven, 1996:11–24.
19. , , Quality adjusted survival analysis. Stat Med 1990; 9:1259–76.
20. Taking Quality of Life into Account in Health Economics Analysis: National Cancer Institute, 1996.
21. , Incorporating utility-based quality-of-life assessment measures in clinical trials. Two examples. Med Care 1989; 27(3 Suppl):S190–204.
22. , Theory of Games and Economic Behavior. Princeton: Princeton University Press, 1944.
23. , Clinical Decision Analysis. Philadelphia: W.B. Saunders, 1980.
24. , , Cox regression models for quality adjusted survival analysis. Stat Med 1993; 12:975–87.
25. , , , , Quality adjusted survival analysis with repeated quality of life measures. Stat Med 1998; 17:1215–29.
26. , , Estimation of expected quality adjusted survival by cross-sectional survey. Stat Med 1996; 15:93–102.
27. , , Estimation of mean quality adjusted survival time. Stat Med 1999; 18:1541–54.
28. , , , , , A comparison of health utility measures for the evaluation of multiple sclerosis treatments. J Neurol Neurosurg Psychiatr 2005; 76:58–63.
29. , , Time trade-off utility modified to accommodate degenerative and life-threatening conditions. Presented at the 2001 American Medical Informatics Association Symposium, Washington, DC.
30. , , , , , Patient utilities in ankylosing spondylitis and the association with other outcome measures. J Rheumatol 1994; 21:1298–304.
31. , , , , Survey of persons with multiple sclerosis in Ottawa, 1974–75. Can J Public Health 1977; 68:141–7.
32. , The relationship between descriptive and valuational quality-of-life measures in patients with intermittent claudication. Med Dec Making 1996; 16:217–25.
33. , Methodology for measuring health-state preferences–II: scaling methods. J Clin Epidemiol 1989; 42:459–71.
34. , , , , The effect of search procedures on utility elicitations. Med Dec Making 1998; 18:76–83.
35. Utility approach to measuring health-related quality of life. J Chronic Dis 1987; 40:593.
36. , , , et al. Recommendations on health-related quality of life research to support labeling and promotional claims in the United States. Qual Life Res 2000; 9:887–900.
37. , , , Risk preference for gains and losses in multiple objective decision making. Manage Sci 1986; 31:1065–86.
38. , , , Measuring health outcomes in multiple sclerosis: why, which and how? In Thompson AJ, Polman C, Hohlfeld, eds. Multiple Sclerosis: Clinical Challenges and Controversies. St. Louis: Mosby, 1997:211–26.
39. Clinimetrics. New Haven: Yale University Press, 1987.
40. , Functional disability scales. In Quality of Life and Pharmacoeeconomics in Clinical Trials. Philadelphia: Lippincott Raven, 1996: 133–41.
41. , , , et al. Quality of life in multiple sclerosis is associated with lesion burden and brain volume measures. Neurology 2009; 72:1760–5.
42. , , , , , Change in clinician-assessed measures of multiple sclerosis and subject-reported quality of life: results from the IMPACT study. Mult Scler 2006; 12:180–6.
43. , , , et al. The patient-reported outcomes measurement information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. J Clin Epidemiol 2010; 63:1179–94.
44. , , , Development of symptom assessments utilising item response theory and computer-adaptive testing–a practical method based on a systematic review. Crit Rev Oncol-Hematol 2010; 73:47–67.
45. , , , Developing tailored instruments: item banking and computerized adaptive assessment. Qual Life Res 2007; 16 Suppl 1:95–108.
46. Patient-reported outcomes measurement and management with innovative methodologies and technologies. Qual Life Res 2007; 16 (Suppl 1):157–66.
47. Neuor-QoL: Progress report 2004–2007: NINDS, Evanston Northwestern Health Care, 2008.
48. , , , , Quality of life in multiple sclerosis. Comparison with inflammatory bowel disease and rheumatoid arthritis. Arch Neurol 1992; 49:1237–42.
49. , , , et al. A comparison of health-related quality of life in patients with epilepsy, diabetes and multiple sclerosis. Epilepsy Res 1996; 25:113–18.
50. , , , Quality of life as a predictor for change in disability in MS. Neurology 2000; 55:51–4.
51. , , , Determinants of Health-Related Quality of Life in Multiple Sclerosis: The role of illness intrusiveness. Mult Scler 2002; 8:310–18.
52. , , An epidemiological perspective. In: Anonymous, ed. Quality of Life and Pharmacoeconomics in Clinical Trials. Philadelphia: Lippincott-Raven, 1996:555–62.
53. , , , , Disability in elderly people with multiple sclerosis: an analysis of baseline data from the Sonya Slifka Longitudinal Multiple Sclerosis Study. Neurorehabilitation 2004; 19:55–67.
54. , , , , Quality of life in people with multiple sclerosis: data from the Sonya Slifka Longitudinal Multiple Sclerosis Study. J Health Hum Serv Admin 2007; 30:233–67.
55. Helping the Nation with Health Services Research. Rockville: US Department of Health and Human Services, 2002.
56. Introduction. In: Anonymous, ed. Quality of Life and Pharacoeconomics in Clinical Trials. Philadelphia, New York: Lippincott-Raven, 1996:1–10.
57. , , , et al. Web-based self-management for patients with multiple sclerosis: a practical randomized trial. Telemed e-Health 2010; 17: 5–13.
58. . Multiple Sclerosis Quality of Life Inventory: A User's Manual. New York: National Multiple Sclerosis Society, 1997.
59. , Using quality of life tests for patient diagnosis or screening, or to evaluate treatment. In Spilker B, ed. Clinical Trials and Pharmacoeconomics in Clinical Trials. Philadelphia: Lippincott-Raven, 1996:363–74.
60. , , , Pharmacoeconomics and quality of life research beyond the randomized clinical trial. In Spilker B, ed. Quality of Life Research and Pharamcoeconomics in Clinical Trials. Philadelphia: Lippincott-Raven, 1996:155–60.
61. , , , et al. Quality of life assessment in multiple sclerosis clinical trials: current status and strategies for improving multiple sclerosis clinical trial designs. In Goodkin DE, Rudick RA, eds. Multiple Sclerosis: Advances in Clinical Trial Design, Treatment and Future Perspectives. London: Springer, 1996:145–60.
62. , , , et al. Benefit of interferon beta-1a on MSFC progression in secondary progressive MS. Neurology 2002; 59:679–87.
63.Office of Communications DoDI, Center for Drug Evaluation and Research Food and Drug Administration. Guidance for Industry Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims. In. Silver Spring, MD: Office of Communications, Division of Drug Information, Center for Drug Evaluation and Research, Food and Drug Administration, 2009.
64. , Quality of life in multiple sclerosis: determinants, measurement, and use in clinical practice. Curr Neurol Neurosci Rep 2010; 10:397–406.
65. , , , , A health-related quality of life measure for multiple sclerosis. Qual Life Res 1995; 4:187–206.
66. , , , , The effect of low-dose naltrexone on quality of life of patients with multiple sclerosis: a randomized placebo-controlled trial. Mult Scler; 16:964–9.
67. , , , Comparison of pelvic floor muscle training, electromyography biofeedback, and neuromuscular electrical stimulation for bladder dysfunction in people with multiple sclerosis: a randomized pilot study. Neurourol Urodyn 2006; 25:337–48.
68. , , , Treatment for depression and its relationship to improvement in quality of life and psychological well-being in multiple sclerosis patients. Qual Life Res 2005; 14:695–703.
69. , , Long-term exercise improves functional impairment but not quality of life in multiple sclerosis. J Neurol 2005; 252:839–45.
70. , , , et al. Validation of the functional assessment of multiple sclerosis quality of life instrument. Neurology 1996; 47:129–39.
71. , , , Long-term benefits of exercising on quality of life and fatigue in multiple sclerosis patients with mild disability: a pilot study. Clin Rehabil 2008; 22:206–14.
72. , , , et al. Effect of early versus delayed interferon beta-1b treatment on disability after a first clinical event suggestive of multiple sclerosis: a 3-year follow-up analysis of the BENEFIT study. Lancet 2007; 370:389–97.
73. , , , , , The effect of Ginkgo biloba on functional measures in multiple sclerosis: a pilot randomized controlled trial. Explore: J Sci Healing 2006; 2:19–24.
74. , , , et al. Quality of life in multiple sclerosis: the disability and impact profile (DIP). Neurol 1996; 243:469–74.
75. , , , et al. Dose comparison trial of sustained-release fampridine in multiple sclerosis. Neurology 2008; 71:1134–41.
76. , , , , North American Study Group on Interferon beta-1b in Secondary Progressive MS. Interferon beta-1b in secondary progressive MS: results from a 3-year controlled study. Neurology 2004; 63:1788–95.
77. , , , Quality of life in multiple sclerosis: development and validation of the “RAYS” scale and comparison with the SF-36. Int J Qual Health Care 2000; 12:511–7.
78. , , , , , Developing a disease-specific quality of life measure for people with multiple sclerosis. Clin Rehabil 2001; 15:247–58.
79. , , , et al. Disease specific quality of life instruments in multiple sclerosis: validation of the Hamburg Quality of Life Questionnaire in Multiple Sclerosis (HAQUAMS). Mult Scler 2001; 7:119–30.
80. , , , et al. A double blind, placebo-controlled, crossover study on the effect of MS14, an herbal-marine drug, on quality of life in patients with multiple sclerosis. J Med Plant Res 2009; 3:271–5.
81. , , , et al. Impact of aerobic training on immune-endocrine parameters, neurotrophic factors, quality of life and coordinative function in multiple sclerosis. J Neurol Sci 2004; 225:11–18.
82. , , , , The Multiple Sclerosis Impact Scale (MSIS-29): a new patient-based outcome measure. Brain 2001; 124:962–73.
83. , , Reflexology for the treatment of pain in people with multiple sclerosis: a double-blind randomised sham-controlled clinical trial. Mult Scler 2009; 15:1229–338.
84. , , Neuromuscular electrical stimulation and the treatment of lower urinary tract dysfunction in multiple sclerosis – a double blind, placebo controlled, randomised clinical trial. Neurourol Urodyn 2008; 27:231–7.
85. , , , Effectiveness of rehabilitation intervention in persons with multiple sclerosis: a randomised controlled trial. J Neurol Neurosurg Psychiatry 2008; 79:1230–5.
86. , , , et al. Validation of the Multiple Sclerosis International Quality of Life questionnaire. Multiple Sclerosis 2008; 14:219–30.
87. , , , , , Stability and relative validity of the Multiple Sclerosis Impact Profile (MSIP). Disabil Rehabil 2008; 30:1027–38.
88. , , , , The development of patient-reported outcome indices for multiple sclerosis (PRIMUS). Mult Scler 2009; 15:1092–102.
89. , , , , , The functional index for living with multiple sclerosis: development and validation of a new quality of life questionnaire. Mult Scler 2009; 15:1239–49.
90. , , , et al. Interferon-Beta1b in the treatment of secondary progressive MS: impact on quality of life. Neurology 2001; 57:1870–5.
91. , , , et al. Natalizumab plus interferon beta-1a for relapsing multiple sclerosis. New Engl J Med 2006; 354:911–23.
92. , , , et al. A randomized, placebo-controlled trial of natalizumab for relapsing multiple sclerosis. New Engl J Med 2006; 354:899–910.
93. , , , et al. Health-related quality of life in multiple sclerosis: effects of natalizumab. Ann Neurol 2007; 62:335–46.
94. , , , , The SF-36 in multiple sclerosis: why basic assumptions must be tested. J Neurol Neurosurg Psychiatry 2001; 71:363–70.
95. , , , Clinical appropriateness: a key factor in outcome measure selection: the 36 item short form health survey in multiple sclerosis. J Neurol Neurosurg Psychiatry 2000; 68:150–6.
96. , , , , , A new short form individual quality of life measure (SEIQoL-DW): application in a cohort of individuals with HIV/AIDS. BMJ 1996; 313:29–33.
97. , , , et al. Assessment of potential cardiotoxic side effects of mitoxantrone in patients with multiple sclerosis. Eur Neurol 2005; 54:28–33.
98. Tysabri withdrawal calls entire class into question. Nature Med 2005; 11:359.