NARCOMS Report-Sharing NARCOMS Results With the MS Community
Sharing NARCOMS Results With the MS Community
Tuula Tyry, PhD, MAED––NARCOMS Program and Editorial Manager, Barrow Neurological Institute, Phoenix, Arizona
Introduction
The purpose of the NARCOMS database is two-fold: to expedite clinical trial recruitment and to facilitate multiple sclerosis (MS) research in general. Over the course of the past 10 years, thousands of Registry participants have been notified of one or more studies for which they might qualify for. We often hear from concerned participants, however, who have not been contacted about participating in a clinical trial or any other MS-related research study. They often raise the question whether there is any point to completing the semiannual update surveys for those who don’t seem to meet the typical clinical trial inclusion criteria in terms of age or treatment status. The answer, of course, is an enthusiastic Yes! It is important to realize, that data obtained from all the Registry participants, whether they qualify for any particular clinical trial or not, nevertheless continue to be a unique and invaluable resource for the MS research community. To better illustrate this aspect of the NARCOMS database use we have listed below samples of research done by analyzing NARCOMS data. All the results have been shared with researchers and clinicians in peer-reviewed journals and scientific conferences.
Publications
Fraser, C., Hadjimichael, O., & Vollmer. T. (2003). Predictors of adherence to Copaxone therapy in individuals with self-reported progressive forms of multiple sclerosis. Journal of Neuroscience of Nursing, 33(5), 231-239.
Hadjimichael, O., Kerns, R., Rizzo M., & Vollmer T. (2005). Persistent pain and uncomfortable sensations in persons with multiple sclerosis. Submitted for publication in Archives of Neurology.
Lo, A., Hadjimichael, O., & Vollmer, T. (2005). Treatment patterns of multiple sclerosis patients: A comparison of veterans and non-veterans using the NARCOMS registry. Multiple Sclerosis, 11(1), 33-40.
Marrie, R. A., Cutter, C., Tyry, T., Campagnolo, D., & Vollmer, T. (2005). Does multiple sclerosis-associated disability differ between races? Accepted for publication in Neurology.
Marrie, R. A., Cutter, C., Tyry, T., Hadjimichael, O., Campagnolo, D., & Vollmer, T. (2005). Changes in the ascertainment of multiple sclerosis. Neurology, 65(7), 1066-1070.
Marrie, R. A., Cutter, G., Tyry, T., Hadjimichael, O., Campagnolo, D. & Vollmer, T. (2005). Validation of the NARCOMS Registry: Fatigue assessment. Multiple Sclerosis, 11(5), 584-584.
Marrie, R. A., Cutter, G., Tyry, T., Hadjimichael, O., & Vollmer, T. (2004). Validation of the NARCOMS Registry: Pain assessment. Multiple Sclerosis, 11, 338-342.
Marrie, R. A., Hadjimichael, O., & Vollmer, T. (2003). Predictors of alternative medicine use by multiple sclerosis patients. Multiple Sclerosis, 9(5), 461-466.
Rizzo, M., Hadjimichael, O., Li, J., Preningerova, J., & Vollmer, T. (2004). Prevalence and treatment of spasticity reported by multiple sclerosis patients. Multiple Sclerosis, 23(10), 589.
Rizzo, M., Hadjimichael, O., Buenconsejo, J., Preiningerova, J., Vollmer, T. L. (2002). P191 spasticity in MS patients in the NARCOMS Registry: Prevalence, severity and treatment patterns using oral agents and/or intrathecal baclofen. Multiple Sclerosis Clinical and Laboratory Research, 8(1), S80.
Vollmer T., Ni, W., Stanton, S., & Hadjimichael, O. (1999). The NARCOMS Patient Registry: A Resource for Investigators. International Journal of MS Care, 1, 12-15. Vollmer, T., Hadjimichael, O., Preiningerova, J., Ni, W., & Buenconsejo-Singuego, J. (2002). Disability and treatment patterns of multiple sclerosis patients in the USA: A Comparison of Veterans and non-veterans. Journal of Rehabilitation Research and Development, 39(2), 163-174.
Conference Presentations, Abstracts, and Posters
Campagnolo, D. (2005). NARCOMS database. Workshop presentation at the 19th Annual CMSC meeting in Orlando, June 2005.
Fraser, C., Hadjimichael, O., & Vollmer, T. (2000). Predictors of adherence to Copaxone® therapy in individuals with relapsing remitting multiple sclerosis. Presented at Consortium of Multiple Sclerosis Centers (CMSC) Annual Meeting in Halifax, Canada, June, 2000.
Hadjimichael, O. (2004). Gender-Dependent MS: Males as seen in the NARCOMS patient registry. Workshop presentation, CMSC annual meeting in Toronto, June, 2004.
Hadjimichael O, Li, J., & Vollmer, T. (2003). NARCOMS Patient Registry: An Update––MS treatment in the USA. Platform presentation, CMSC annual meeting in San Diego, May, 2003
Hadjimichael, O., & Vollmer, T. (1999). Adherence to injection therapy in multiple sclerosis: Patient survey. Presented at American Academy of Neurology 51st Annual Meeting in Toronto Canada. (Abstract in Neurology, 52, suppl.2)
Hadjimichael, O., Vollmer, T. L., Hayes, M., Marshall, L., & Tupper, R. (1997). The regional patient registry for clinical trials as a model for the NARCOMS Patient Registry. Presented at the Consortium of Multiple Sclerosis Centers (CMSC) Annual Meeting, Calgary, Alberta, Canada, 1997.
Marrie, R. A. (2005). Validation of the NARCOMS database. Workshop presentation at the 19th Annual CMSC meeting in Orlando, FL, June, 2005.
Marrie, RA., Cutter, G., Tyry, T., Hadjimichael, O., & Vollmer, T. (2005). Validation of the NARCOMS Registry: Pain Assessment. American Academy of Neurology, Miami, FL, April 9-15, 2005 (poster).
Marrie, RA., Cutter, G., Tyry, T., Hadjimichael, O., & Vollmer, T. (2005). Changes in the ascertainment of multiple sclerosis. American Academy of Neurology, Miami, FL April 9-15, 2005 (poster).
Marrie, R.A., Cutter, G., Tyry, T., Hadjimichael, O., & Vollmer, T. (2005). Validation of the NARCOMS Registry:
fatigue assessment. Poster S45 at the CMSC conference in Orlando, FL, June 1-5, 2005.
Ni, W., Hadjimichael, O., Rizzo, M., & Vollmer, T. (2001). The impact of child birth on the progression of disability in MS. Poster presentation at the Consortium of Multiple Sclerosis Centers (CMSC) Annual Meeting in Forth Worth, TX, May, 2001.
Ni, W., Hadjimichael, O., Vollmer, T., Rizzo, M. (2001). Pain syndromes in MS: Severity, impact on quality of life, and treatment patterns. Presented at the 53rd Annual Meeting of the American Academy of Neurology, May, 2001.
Rizzo, M., Hadjimichael, O., Li, J., Kerns, R., & Vollmer, T. (2003). Positive Symptom complexes in multiple sclerosis. A NARCOMS study. A platform presentation at the 17th Annual meeting of the CMSC in San Diego, CA, May, 2003.
Preiningerova, J., Hadjimichael, O., Vollmer, T. & Rizzo, M. (2003). Validation of patient-reported disease descriptors in the NARCOMS Patient Registry. The 17th Annual meeting of the CMSC in San Diego, CA, May, 2003.
Tyry, T. (2005). How to use NARCOMS Registry: Practical guidelines. Workshop presentation at the 19th Annual CMSC meeting in Orlando, FL, June, 2005. Tyry, T. (2004). Quality of Life in MS: Presented with data from the NARCOMS Patient Registry. ICODIMS presentation at the 18th Annual meeting of the CMSC in Toronto, Canada, June, 2004.
Tyry, T., Campagnolo, D., Marrie, R.A., Hadjimichael, O., Cutter, G., & Vollmer, T. (2005). Symptom control and quality of life following mitoxantrone treatment. Poster S59 at the CMSC conference in Orlando, FL, June 1-5, 2005.
Vollmer, T. (2004). Update on NARCOMS status: Disability as a function of disease duration. ICODIMS presentation at the 18th Annual meeting of the CMSC in Toronto, Canada, June, 2004.
Vollmer, T. (2000). Issues for care of MS patients in the rural environment. A poster presentation at Consortium of Multiple Sclerosis Centers (CMSC) Annual Meeting in Halifax, Canada, June, 2000.
Vollmer, T., & Hadjimichael, O. (2005) Are untreated MS patients representative of historical controls: What do they say about trial recruitment? Presented at the AAN annual conference in Orlando, FL, in April, 2005.
Vollmer, T., Hadjimichael, O., & Ni ,W. (2000). Development and uses of the NARCOMS Registry. Presented at the Consortium of Multiple Sclerosis Centers (CMSC) Annual Meeting, Halifax, Canada, June 2000. (Abstract published online [www.mscare.org] in the International Journal of MS Care, 2(2), 2000.)
Vollmer, T., Hadjimichael, O., & Ni, W. (2000). Effect of race in the treatment of MS. Presented at Consortium of Multiple Sclerosis Centers (CMSC) Annual Meeting in Halifax, Canada, June, 2000.
Vollmer, T., Hadjimichael, O., & Ni, W. (2000). The North American Research Committee on Multiple Sclerosis patient registry: Current status report. Presented at the American Academy of Neurology Annual Meeting in San Diego, CA.
Vollmer, T. Hadjimichael, O., & Ni, W. (1999). The cause of non-adherence to disease-course altering therapies: A comparative study. Poster presentation at ECTRIMS/ACTRIMS 99, Basel, Switzerland.
Vollmer, T., Ni., W., & Hadjimichael, O. (2001). Care and treatment patterns of multiple sclerosis in the US. Presented at the International Federation of Multiple Sclerosis Conference in Melbourne, Australia, October, 2001.
Vollmer, T., Ni., W., & Hadjimichael, O. (2001). Subtypes of MS: Biological and clinical characteristics as seen in the NARCOMS patient registry. Presented at 2001 Meeting of the European Committee for Treatment and Research in Multiple
Sclerosis (ECTRIMS) in Dublin, Ireland, September, 2001.
Vollmer, T., Ni., W., & Hadjimichael, O. (2001). Subtypes of MS: Biological factors and progression of disease. Poster presentation at the 53rd Annual Meeting of the American Academy of Neurology, May, 2001.
Vollmer, T., Ni., W., & Hadjimichael, O. (2001). Treatment patterns of various types on MS in the US: Using NARCOMS patient registry for outcomes studies. Presented at ICODIMS Meeting, Consortium of Multiple Sclerosis Centers (CMSC) Annual Meeting in Forth Worth, TX, May, 2001.
Vollmer, T., Ni, W., & Hadjimichael, O. (2000). Multiple sclerosis treatment patterns at the end of the 20th century. Poster
presentation at the Consortium of Multiple Sclerosis Centers (CMSC) Annual Meeting, Halifax, Canada, June 2000. (Abstract published online [www.mscare.org] in the International Journal of MS Care, 2(2), 2000.)
Vollmer, T., Ni, W., & Hadjimichael, O. (1999). Utilization patterns of immunological therapies among VA patients with multiple sclerosis. Presented at American Neurological Association 124th Annual Meeting in Seattle, WA.
Vollmer, T., Ni, W., & Hadjimichael, O. (1999). Why are eligible patients with multiple sclerosis not on treatment with interferon beta or glatiramer acetate: Risk factors for non-treatment. Presented at American Neurological Association 124th Annual Meeting in Seattle, WA.
Vollmer, T., Ni, W., & Hadjimichael, O. (1999). The North American Research Committee on Multiple Sclerosis Patient Registry: A progress report. Presented at the 15th Congress of the European Committee for Treatment and Research In Multiple Sclerosis/4th Annual Meeting of America’s Committee for Treatment and Research In Multiple Sclerosis (ECTRIMS/ACTRIMS 99), Basel, Switzerland, 1999. (Abstract published in Multiple Sclerosis, 5, Suppl. 1, 1999, p. S74.)
Vollmer, T., Ni , W., Hadjimichael, O., & Auld, E. A study by the North American Research Consortium on Multiple Sclerosis (NARCOMS) of patients with multiple sclerosis in the Veterans Healthcare Administration (VHA) compared to the non-VHA population. Presented at the Rehabilitation In Multiple Sclerosis-Consortium of Multiple Sclerosis Centers (RIMS-CMSC) Joint Symposium, Basel, Switzerland, 1999. (Abstract published in Multiple Sclerosis, 5, Suppl. 1, 1999, p. S130.)
Vollmer, T., Ni, W., Hadjimichael, O., & Rizzo, M. (2001). Biological factors and subtypes of MS. Presented at the Consortium of Multiple Sclerosis Centers (CMSC) Annual Meeting in Forth Worth, TX, May, 2001.