NARCOMS Report: Registry Status in Spring 2009

Tuula Tyry, PhD––NARCOMS Program Manager, Barrow Neurological Institute, Phoenix, Arizona
Introduction
As many of you already know, the North American Research Committee on Multiple Sclerosis (NARCOMS) project is now part of a more extensive program entitled Global Demyelinating Disease Registry. This entity currently consists only of Global MS Patient Registry, but is designed to later expand… »

Effect of Co-existing Health Conditions on MS

Ruth Ann Marrie, MD, PhD––University of Manitoba, GF 543, Health Sciences Centre, Winnipeg, MB

Introduction
Comorbidity, or co-existing health conditions, is common. In 1987, 88.5 million Americans had one or more chronic health conditions which needed medical care or affected activity levels (Hoffman, Rice, & Sung, 1996). Forty-four percent of persons with chronic conditions had more than… »

NARCOMS MS Patient Registry Long-Term Study

Most persons who receive this publication (MSQR) are already enrolled in the survey-based NARCOMS MS Patient Registry Long- Term Study (especially if there is a number immediately above your name on the address label). If you know other persons with MS in the US who might like to participate, however, we would be pleased to… »

NARCOMS Report-Patient Determined Disease Steps (PDDS)

This issue of the North American Research Committee on Multiple Sclerosis (NARCOMS) Report focuses on two questions: 1. How a sample of NARCOMS registrants with different disease duration rate their own level of disability (if any) and 2. How this disability level may differ between men and women and different racial/ethnic groups.
In each NARCOMS update… »

Spanish-Translated Article: NARCOMS Report-Participación en el ejercicio

Introducción
En esta edición de MSQR hemos seguido discutiendo el papel de la actividad física en el tratamiento y mantenimiento de la esclerosis múltiple (EM), esta vez resaltando algunos de los beneficios de la yoga. Como muchos de los lectores habrán observado, NARCOMS ha recogido datos relacionados a una variedad de actividades físicas en varias… »

NARCOMS Report-Exercise Participation

NARCOMS looks at the role of physical activity in the treatment and management of Multiple… »

Hispanic/Latino NARCOMS Participants

North American Research Committee on Multiple Sclerosis summary of Registry participants who have identified themselves as Hispanic or… »

NARCOMS Report 27.2

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Health Care Resource Usage Among NARCOMS Participants

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NARCOMS Report-2007 Registry Update

2007 Registry Update
Patricia Davis, MS, NARCOMS Database Coordinator, Barrow Neurological Institute, Arizona; Tuula Tyry, PhD, MAEd, Program and Editorial Manager, Barrow Neurological Institute, Phoenix, Arizona
Introduction
CMSC/NARCOMS is a long-term MS research project driven by voluntary enrollee participation. Participants are asked to complete updates twice a year by mail or a secure online survey. The NARCOMS Patient… »

NARCOMS Report-Relapse Management

Tuula Tyry PhD, MAEd–Program and Editorial Manager, Barrow Neurological Institute, Phoenix, Arizona
Introduction
A relapsing-remitting disease course is typical in most cases of multiple sclerosis (MS), especially during its early stages. Optimal treatment of each relapse (or exacerbation) depends on its severity and other factors as described in the lead article in this issue (see pages 6-11)…. »

NARCOMS Report-Recent Research Findings

Ruth Ann Marrie, MD, PhD-Mellen Center for MS Treatment and Research, Cleveland Clinic Foundation-CMSC/NARCOMS Research Fellow; Tuula Tyry, PhD, MAED-NARCOMS Program and Editorial Manager-Barrow Neurological Institute, Phoenix, Arizona
Introduction
The Consortium of Multiple Sclerosis Centers (CMSC) started the NARCOMS project in 1993 to aid multiple sclerosis (MS) research. More than 32,000 persons have enrolled in the NARCOMS… »

NARCOMS Report–2006 Registry Update

Breanna Bullock, MHSM NARCOMS Database Coordinator, Barrow Neurological Institute,Arizona; Tuula Tyry, PhD, MAED NARCOMS Program Manager, Barrow Neurological Institute, Arizona
Introduction
According to the 2007 estimate by the National Multiple Sclerosis Society, the number of people with MS currently living in the US is about 400,000. As of February 2007, more than 31,000 (8%) of them had… »

MS CarePartner Stress–A NARCOMS Study

Mary Elizabeth Quig, PhD–MS Center, Neurology Center of Fairfax, Fairfax,VA; James Simsarian, MD–MS Center, Neurology Center of Fairfax; Gary Cutter, PhD–University of Alabama; Denise Campagnolo, MD–Barrow Neurological Institute;Tuula Tyry, PhD–Barrow Neurological Institute;Timothy Vollmer, MD–Barrow Neurological Institute; Ruth Ann Marrie, MD–Mellen Center of MS Treatment and Research; Carol Saunders, RN, BSN–Neurology Center of Fairfax.
Introduction
What impact does… »

NARCOMS Report–Symptomatic Medication and Cognitive Impairment in MS

Breanna Bullock, BA–NARCOMS Database Coordinator, Barrow Neurological Institute, Arizona.
Introduction
Cognitive deficits in multiple sclerosis (MS) are known to be a common feature of the disease. Presently, up to 65% of patients are affected (Bobholz & Rao, 2003; Amato, Portaccio, & Zipoli, 2006) and many report that they find the symptoms troublesome. It is well established that… »

NARCOMS Report–Regional Differences in Treatment Status

By Tuula Tyry, PhD, MAED, Narcoms Program and Editorial Manager–Barrow Neurological Institute, Phoenix, Arizona
Introduction
Diagnosis of MS can be complicated as there is no single, conclusive test for a clinician to use. Introduction of MRI techniques and the McDonald criteria have streamlined the diagnostic process, but it can still take several years before a suspected disease… »

Studies Examine Aging With MS With Help of NARCOMS Registrants

Marcia Finlayson, PhD, OTR/L, MSCS–Associate Professor, Department of Occupational Therapy, University of Illinois at Chicago
Introduction
There are approximately 400,000 people with multiple sclerosis (MS) in the US, and it has been estimated that 45% of them are over the age of 55 (Minden, Marder, Harrold, & Dor, 1993). For most people with MS, current knowledge suggests… »

NARCOMS Report-Seasonal Patterns in Birth Rate

Tuula Tyry, PhD–NARCOMS Program and Editorial Manager, Barrow Neurological Institute, Arizona; Breanna Bullock, BA–NARCOMS Database Coordinator, Barrow Neurological Institute,Arizona
Introduction
Epidemiological research studies patterns, causes, and control of disease in various populations. Since NARCOMS Registry participants often submit questions and comments about the epidemiological factors linked to MS prevalence and incidence, we asked Drs. Wallin and Kurtzke… »

NARCOMS Report-Registry Status

Tuula Tyry, PhD, MAED, Narcoms Program and Editorial Manager–Barrow Neurological Institute, Phoenix, Arizona
Introduction
The CMSC/NARCOMS MS Patient Registry has now been operating for about 10 years. It has collected self-reported data from over 31,000 people with multiple sclerosis (MS). The accumulated data are used to match participants with clinical trials and other MS-related research studies nationwide… »

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… »