Registry History

Background:

During preclinical studies of Alzheimer’s disease it became clear that risk factors for Alzheimer’s disease overlapped significantly with risk factors for cardiovascular disease including high cholesterol. One important result of these studies was that the quality of the drinking water might interact with high cholesterol levels and play an important role in the etiology of the Alzheimer’s disease. Although it was possible to obtain the results of water analysis throughout West Virginia, it was difficult to obtain accurate estimates of the number of people in West Virginia with Alzheimer’s disease or related disorders. Despite the best efforts of the West Virginia Department of Health and Human Resources as well as the West Virginia Chapter of the Alzheimer’s Association, estimates of the number of West Virginians with Alzheimer’s disease were out of date and based on secondary sources such hospital discharge records. We suspect that these numbers may just be “the tip of the iceberg”.

Legislation:

Based on a model developed in South Carolina, faculty of the West Virginia University School of Medicine together with representatives of the WV Alzheimer’s Association, the Department of Health and Human Resources, the Blanchette Rockefeller Neurosciences Institute, and the South Carolina Alzheimer’s Disease and Related Dementias Registry formulated and proposed legislation that would establish a registry of people in West Virginia with AD and related disorders. This legislation was introduced in the West Virginia Legislature on January 11th, 2006 as Senate Bill 112 by Senator Roman Prezioso, Chair of the Senate Health and Human Resources Committee and sponsored by all the members of that committee (Senators Prezioso, Sharpe, Hunter, Foster, Unger, Jenkins, Plymale, Helmick, Dempsey, White, Fanning, Sprouse, Deem, Yoder, Facemyer, Love, Bowman and Minard). SB 112 passed on March 11th, 2006, was signed by Governor Joe Manchin and became law on June 11th, 2006.

Procedural Rules:

In parallel with the legislative process, Rules governing the West Virginia Alzheimer’s Disease Registry were written in consultation with Beverly Kerr, WVU Associate Counsel, and Jeff Johnson, Counsel to WV Senate Health and Human Services Committee over the course of 2007. These rules set forth and established procedures governing the registry including purpose, content, data management, confidentiality, security and protection, and an advisory board. The Procedural Rule (64-94) for the West Virginia Alzheimer’s Disease Registry was submitted to the Secretary of State, underwent a comment period, was revised and went into effect December 27th, 2007.

Registry:

Included in the Procedural Rules process was the creation of a data collection form. This form was then refined and formatted into a single page so it could be mailed or faxed to participants. In parallel, a web-based electronic data form was developed in collaboration with United Biosource Corporation – a regional, national and world leader in disease and medical registries. Extensive testing as well as close consultation with the Advisory Board for the West Virginia Alzheimer’s Disease Registry culminated in completion and launch of the registry in May, 2011.

Data Collection:

Data collection began with a few selected physicians to assess the ease and functionality of the web-based data entry portal and the time required to collect and enter the requested information.  From there, healthcare providers throughout the state were contacted about the West Virginia Alzheimer’s Disease Registry through direct mailings, journal articles, presentations at local and state-wide meetings, and via CME courses.  By 2013 we had collected more than 3,500 entries.  Although encouraging, these early successes fell short of the 36,000 people in West Virginia the Alzheimer's Association estimates have Alzheimer's Disease or a related dementia.  To help fill this gap, we initiated a state-based request in 2013 for Medicare data on beneficiaries with Alzheimer's Disease or a related dementia from CMS.  By early 2015, the inclusion of Medicare data increased the number of entries in the West Virginia Alzheimer’s Disease Registry to almost 28,000.