Capacity building for timely diagnosis of Multiple Sclerosis and prevention of disability

Abstract
This application proposes to address priority areas for improvement in the care of multiple sclerosis (MS) in Colombia (a low-middle income country), which is a country with a population that is ancestrally and genetically diverse and whose region is in economic and research development. MS is an immune-mediated disease where geography, population differences play a role in disease risk and progression. The feasibility of our proposed project is supported by the success of the multi-center Alliance for Research in Hispanic MS (ARHMS; arhms.org) efforts that we spearheaded and have led to a better understanding of how genetic ancestry in MS in Hispanic people in the United States mainland and Puerto Rico plays a role in clinical presentation. Our initial collaborations with Colombia suggest, however, healthcare barriers. A particular concern is the increased number of MS cases being reported and the substantial diagnostic delays. Whether it is an issue of barriers experienced by healthcare providers or patients or other non-medical drivers of health are unknown. Nevertheless, these factors are likely important to consider when examining future MS outcomes. This exploratory proposal will provide support to 1)build local capacity to prevent diagnostic delays in MS, 2) fortify stakeholder and community relationships by better understanding the perceptions and attitudes of MS in the community and 3) integrate genetic and non-medical drivers of health assessments into research studies. Specific Aim 1 will identify the barriers that healthcare providers experience, Aim 2 will examine illness perceptions and attitudes in patients to help develop health promotion programs with local patient advocacy groups, and Aim 3 will develop research capacity for the collection of non-medical drivers of health and genetic diversity. This will provide the characterization of 200 patients with MS and their genetic variability, fortify community relationships, and identify context-specific barriers that will guide the development of future interventions.

Grant Number: 1RF1TW013272-01
NIH Institute/Center: NIH
Principal Investigator: Lilyana Amezcua