1. Anderson FA Jr, Miller RG. ALS CARE: A resource for measuring and improving ALS outcomes. Neurology. 1996;47(Suppl 2):113S -116S

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1 Bibliography Manuscripts and Book Chapters 1. Anderson FA Jr, Miller RG. ALS CARE: A resource for measuring and improving ALS outcomes. Neurology. 1996;47(Suppl 2):113S -116S 2. Brooks BR. Risk factors in the early diagnosis of ALS: North American epidemiological studies. ALS and Other Motor Neuron Disorders. 2000;1:(Suppl 1) S19-S26 3. Bradley WG, Anderson FA Jr, Bromberg MB, Gutmann L, Harati Y, Ross MA, Miller RG. Current management of ALS: Comparison of the ALS CARE Database and the AAN Practice Parameter. Neurology. 2001;57: Bradley WG, Anderson FA Jr, Gowda NJ, Miller RG and the ALS CARE Study Group. Changes in the management of ALS since the publication of AAN Practice Parameter ALS and Other Motor Neuron Disorders. 2004; 5: Bromberg MB, Anderson FA Jr, Davidson MC, Miller RG, on behalf of the ALS CARE Study Group. Assessing health status quality of life in ALS: Comparison of the SIP/ALS-19 with the ALS Functional Rating Scale and the Short Form-12 Health SurveyTM. ALS and Other Motor Neuron Disorders. 2001;2: Jackson CE, Lovitt S, Gowda N, Anderson FA, Miller RG, and the ALS CARE Study Group: Factors correlated with NPPV use in ALS. Amyotrophic Lateral Sclerosis. June 2006, 7 (2): Lechtzin N, Wiener C, Clawson L, Diette G, Davidson MC, Anderson FA Jr, Gowda N and the ALS CARE Study Group. Use of Non-Invasive Ventilation in Patients with Amyotrophic Lateral Sclerosis. ALS and Other Motor Neuron Disorders Mar;5(1): Mandler RN, Anderson FA Jr, Miller RG, Clawson L, Cudkowicz M, Del Bene M and the ALS CARE Study Group. The ALS Patient Care Database: Insights into end-of-life care in Amyotropic Lateral Sclerosis. ALS and Other Motor Neuron Disorders. 2001; 2: Miller RG, Anderson FA Jr, Bradley WG, Bromberg MB, Brooks BR, Mitsumoto H, Munsat T, Ringel SP, and the ALS CARE Study Group. The ALS Patient Care Database: Goals, design and early results. Neurology. 2000;54(1): Miller RG, Anderson FA Jr. Establishing benchmarks of ALS management. In: Mitsumoto H, Munsat T (eds) Amyotrophic Lateral Sclerosis: A guide for patients and families. Demos Publishing. New York, Mitsumoto H, Davidson MC, Moore D, Gad N, Brandis M, Ringel SP, Rosenfeld J, Shefner J, ALS Bibliography August 11 Page 1

2 Strong M, Sufit R, Anderson FA Jr and the ALS CARE study group. Percutaneous endoscopic Gastrostomy (PEG) in patients with ALS and bulbar dysfunction. ALS and Other Motor Neuron Disorders. 2003; 4; Abstracts and Presentations 12. Anderson FA Jr, Miller RG, and the ALS CARE Advisory Board. The value of databases in ALS: The ALS Patient Care Database experience. Proceedings of the 12th International Symposium on ALS/MND. Oakland, November 18-20, 2001;2 (Suppl 2); abstract:c39; Boynton-De Sepulveda LI. Depressed VS. Non-Depressed ALS patients as a function of time interval since study enrollment. Proceedings of the 12th International Symposium on ALS/MND. Oakland, November 18-20, 2001;2 (Suppl 2); abstractc70; Boynton-De Sepulveda L, Sufit RL, and the ALS CARE Study Group. Identification of psychological well-being and depression in an ALS population and those factors influencing its presentation. Proceedings of the 15th International Symposium on ALS/MND. Philadelphia, Dec 2-4, 2004: 5 (Suppl 2); abstractp138; Brooks BR, Lii J, Huang W, Anderson FA, Miller RG, Mitsumoto H. Epidemiology of Falls in Amyotrophic Lateral Sclerosis Patients: Analysis of Cross-sectional and Prospective Cohorts in the ALS CARE Registry. Proceedings of the 17th International Symposium on ALS/MND. Yokohama, November 30 December 2, 2006: 7(Suppl 1); abstractp154; Brooks BR, Vann JM, Waclawik AJ, Anderson FA Jr and Gowda NJ and the ALS CARE Study Group. Onset of Amyotrophic Lateral Sclerosis [ALS] is delayed, but of course is not altered, in ALS Patients with Pre-Existing Bone and Joint disease: Neuroepidemiological insights from the ALS Care database. Poster Presentation, Neurology, Honolulu, April 1-6, Brooks BR, Anderson FA Jr and Gowda NJ and the ALS CARE Study Group. Amyotrophic Lateral Sclerosis [ALS] outcomes in US military veterans compared with non-veterans: Neuroepidemiological insights from the ALS Patient Care Database. Proceedings of the 14th International Symposium on ALS/MND. Milan, November 16-18, 2003: 4(Suppl 1); abstractc55; Brooks BR, Harati Y, Gowda NJ, Anderson FA Jr, Bradley WG, Mitsumoto H, Miller RG and ALS CARE Study Group United States. Increased Therapeutic Interventions in US Military Veterans with Amyotrophic Lateral Sclerosis (ALS) following Release of American Academy of Neurology (AAN) ALS Practice Parameter (PP): Neuroepidemiological Insights from ALS CARE Database Proceedings of the 15th International Symposium on ALS/MND. Philadelphia, Dec 2-4, 2004: 5 (Suppl 2); abstractc64; Bradley WG, Anderson FA Jr, Bromberg MB, Gutmann L, Harati Y, Ross MA, Miller RG. Discrepancies between recent management practices in ALS and AAN evidence-based practice parameters, as revealed by the ALS Patient Care Database. Proceedings of the 11th International Symposium on ALS/MND. Arhaus, December 4-6, Bradley WG, Anderson FA Jr, Gowda NJ, Bromberg MB, Gutmann L, Harati Y, Ross MA, Miller RG, and the ALS CARE Study Group. Tracking adherence to the ALS practice parameter. Platform presentation, Neurology, Denver, April 13-20, Bradley WG, Anderson FA Jr, Gowda NJ and the ALS CARE Study Group. Improvement in the ALS Bibliography August 11 Page 2

3 management of ALS since 1999 publication of AAN Practice Parameter: Evidence from ALS Patient Care Database. Proceedings of the 14th International Symposium on ALS/MND. Milan, November 16-18, 2003: 4(Suppl 1); abstractc21; Cashman NR, Cudkowicz ME, Davidson MC, Pioro EP, Rosenfeld J, and the ALS CARE Study Group. Gender effects on duration and onset age of Amyotrophic Lateral Sclerosis. Proceedings of the12th International Symposium on ALS/MND. Oakland, November 18-20, 2001;2 (Suppl 2); abstractc60; Cashman NR, White C, Anderson FA Jr, and the ALS CARE Study Group. Gender and presentation age in the ALS Patient Care Database. Neurology. 2000;52(Suppl 2):A Cashman NR, White C, Anderson FA Jr, and the ALS CARE Study Group. Comorbid conditions in patients with Amyotrophic Lateral Sclerosis (ALS) in the ALS Patient Care Database. Proceedings of the 10th International Symposium on ALS/MND. Vancouver, November 8-10, Cashman NR, White C, Anderson FA Jr, and the ALS CARE Study Group. Later presentation age in women in the ALS Patient Care Database. Proceedings of the 10th International Symposium on ALS/MND. Vancouver, November 8-10, Coker L, Donofrio P, Ross MA, Caress J, Hege A, Ashburn C, Walker T, Gowda N and the ALS CARE Study Group. Gender-related differences in spousal caregiving for patients with ALS. Proceedings of the 13th International Symposium on ALS/MND. Melbourne, November 15-17, 2002; Platform Presentation. 27. Cudkowicz M, Graves M, Miller RG, Boyton de Sepulveda L, Lessard D, Davidson MC, Anderson FA Jr, and the ALS CARE Study Group. Effect of Riluzole use on survival, pulmonary and functional status in a cohort of ALS patients. Proceedings of the 11th International Symposium on ALS/MND. Arhaus, December 4-6, Katz JS, Malone SL, Moore DH, Anderson F, Miller RG and the ALS CARE Study Group. Regional differences between long and short survivors in ALS. Proceedings of the 16 th International Symposium on ALS/MND, Dublin, December 8-10, Amyotrophic Lateral Sclerosis (Suppl 1); 6: Lechtzin N. Respiratory interventions for ALS: Predictors of use and outcomes. Annual Meeting of the American Thoracic Society. May Lechtzin N, Moore D, Miller RG, Mitsumoto H, Brooks BR, Anderson FA Jr, Gowda NJ and the ALS CARE study group. Noninvasive Positive Pressure Ventilation Use and Outcomes in Patients with Amyotrophic Lateral Sclerosis. Proceedings of the 15th International Symposium on ALS/MND. Philadelphia, Dec 2-4, 2004: SESSION 10B: 5(Suppl 2); abstractc88; Mandler RN, Clawson L, Miller RG, and the ALS CARE Study Group. The ALS Patient Care Database: Insights into end-of-life palliative care in Amyotropic Lateral Sclerosis. Ann Neurol. 1999;46(3): Mandler RN, Clawson L, and the ALS CARE Study Group. The ALS Patient Care Database: Caregivers perspective on effectiveness of palliative care. Proceedings of the 9th International Symposium on ALS/MND. Munich, November 16-18, 1998 ALS Bibliography August 11 Page 3

4 33. Miller RG, Anderson F, Bradley W, Brooks BR, Mitsumoto H and the ALS CARE study group. Temporal Trends in the care of patients with ALS North American ALS CARE Database. Proceedings of the 17th International Symposium on ALS/MND. Yokohama, November 30 December 2, 2006 Oral Presentation 34. Miller RG, Anderson FA Jr, Bradley WG, Brooks BR, Mitsumoto H, Munsat TL, Ringel, SP, and the ALS CARE Study Group. The ALS Patient Care Database: A resource for measuring and improving ALS outcomes. Neurology. 1998;50(Suppl 4):A Miller RG, Bromberg MB, Anderson FA Jr, and the ALS CARE Study Group. Assessing the quality of life in ALS: Comparison of the Short Form-12 Health Survey with the ALS Functional Rating Scale, forced vital capacity and ALS Quality of Life Index. Proceedings of the 8th International Symposium on ALS/MND. Glasgow, November 2-4, Miller, RG. The ALS Patient Care Database: Outcomes assessment in practice. Proceedings of the 9th International Symposium on ALS/MND. Munich, November 16-18, Miller, RG, Mitsumoto H, Bradley WG, Gowda NJ, and Anderson FA Jr and the ALS CARE Study Group. Temporal trends in the care of ALS in North America: Proceedings of the 15th International Symposium on ALS/MND. Philadelphia, Dec 2-4, Session 8B: 5(Suppl 2); abstractc62; Mitsumoto H, Bradley WG. Treatment of ALS: Practice guidelines and outcomes assessment. Neurology. 1999;52(Suppl 1): Mitsumoto H, Davidson MC, Moore D, Brandis M, Del Bene M, Cashman NR, Ringel SP, Rosenfeld J, Shefner J, Strong M, Anderson FA Jr. PEG utilization in participants of the ALS Patient Care Database. Neurology. 2001;56(Suppl 3): A Mitsumoto H, Anderson FA Jr, Albert S, Gowda N, Miller R, Rosenfeld J, Strong M, Bromberg M and the ALS CARE study group. Improving end of life care in ALS: Findings from the ALS CARE database. Proceedings of the 15th International Symposium on ALS/MND. Philadelphia, Dec 2-4, 2004: SESSION 8B: 5(Suppl 2); abstractc63; Moore DH, Miller RG, Cudkowicz M, Kaufmann P, Huang W, Anderson FA, Western ALS group, Northeastern ALS group, ALS CARE study group. Development and Validation of a Staging System for ALS. Proceedings of the 15th International Symposium on ALS/MND 2004; 5(Suppl 2); abstractp107; Pioro EP, Malone S, Anderson FA. Atypical features in patients with ALS and their impact on caregiver burden: Findings from the ALS Patient CARE database. Proceedings of the 16 th International Symposium on ALS/MND, Dublin, December 8-10, Amyotrophic Lateral Sclerosis (Suppl 1); 6: Rosenfeld J. Multidisciplinary versus solo practitioner care of the ALS patient. Proceedings of the 11th International Symposium on ALS/MND. Arhaus, December 4-6, Ross MA, Bradley WG, Heinman-Patterson T, Lyon M, Singleton C, Lessard D. The ALS caregiver Insights from the ALS Patient Care Database. Proceedings of the 10th International Symposium on ALS/MND. Vancouver, November 8-10, 1999 ALS Bibliography August 11 Page 4

5 45. Ross MA, Bryan W, Hoagland R, Brooks BR, Harati Y, Parry G, Miller RG, and the ALS CARE Study Group. Application of the El Escorial ALS diagnostic criteria in clinical practice. Neurology. 1999;52(6) Suppl 2:A Ross MA, Bradley WG, Heinman-Patterson T, Lyon M, Gowda NJ, Anderson FA, Dabbous OH, Moore DH and the ALS CARE Study Group. The ALS caregiver New Insights from the ALS Patient Care Database. Proceedings of the 14th International Symposium on ALS/MND. Milan, November 16-18, 2003: 4(Suppl 1); abstractc22; Sufit RL, Miller RG, Mitsumoto H, Parry G, Ringel SP, Lessard D, and the ALS CARE Study Group. Prevalence and treatment of sialorrhea in Amyotrophic Lateral Sclerosis patients as assessed by the ALS Patient Care Database. Ann Neurol. 1999;46(3):506 ALS Bibliography August 11 Page 5

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