Affecting over 5 million Americans, Alzheimer’s disease (AD) has no recognized cure and is difficult to diagnose. More than any other disease, the socio-economic impact of AD is profoundly disturbing. This year nearly 85,000 West Virginians will be caregivers for AD patients at a cost of over $800 million in direct costs and lost wages. AD has become the 7th leading cause of death in America.

Like the disease itself, diagnosis, treatment and care giving can sometimes be confusing. Families are sometimes embarrassed to admit that a loved one is going through the disease until later in the progression, and more often than not, they don’t know who to turn to for information, guidance and help. This gap in understanding how to diagnose and treat the patient and how to empower the caregiver is one of the most important challenges in our understanding of AD and its impact.

To help bridge this gap, the Blanchette Rockefeller Neurosciences Institute (BRNI) has designed a unique program, that may serve as a national model and will both patients and care givers through an intensified education effort aimed at physicians and other providers across the state – the West Virginia Alzheimer’s Outreach and Registry Program (AORP).

Thanks to the exclusive sponsorship of the West Virginia Cable and Telecommunications Association and its largest member companies, BRNI and the AORP have brought together the West Virginia Medical Foundation and the Alzheimer’s Association, West Virginia Chapter in a critical partnership to develop and deploy continuing medical education programs to help keep physicians informed in the latest diagnostic techniques and treatment, as well as to help providers and support care givers through the disease progression.

In addition to the continuing medical education programs, the AORP will create and maintain the first-ever West Virginia Alzheimer’s Disease Registry to collect information on Alzheimer's cases from hospitals, physicians and other caregivers, and create reports - without identifying data - that will allow policymakers and researchers to develop more effective means of dealing with the growing number of Alzheimer's cases in the state.

Together, the elements of the AORP will begin to address the pressing needs of Alzheimer’s patients and their caregivers. AORP was made possible through the ongoing and generous support of the West Virginia Legislature and Governor Manchin.

Outreach and Registry Program Will Help Combat and Treat Alzheimer’s
September 14, 2009

MORGANTOWN, WV – Today Senator Jay Rockefeller announced an unprecedented and powerful partnership to help combat and treat Alzheimer’s disease in West Virginia. The Alzheimer’s Outreach and Registry Program (AORP) at the Blanchette Rockefeller Neurosciences Institute (BRNI) at West Virginia University, brings together some of West Virginia’s most important leaders in the fight against Alzheimer’s disease. In addition to BRNI, the partners include the West Virginia Medical Foundation; the Alzheimer’s Association, West Virginia Chapter; and the West Virginia Bureau of Senior Services. The launch of AORP is made possible through the sponsorship of the West Virginia Cable Telecommunications Association (WVCTA), led by Suddenlink, Comcast and Time Warner Cable. The statewide program has been in development for nearly two years thanks to funding by the state of West Virginia and the Claude Worthington Benedum Foundation.

For the more than 44,000 West Virginians (age 65 and over) who have Alzheimer’s disease and the approximately 85,000 caregivers who care for them every day – sometimes for more than a decade – diagnosis, treatment and care during the progression of the disease is uncertain, confusing and catastrophically expensive. To meet these needs, BRNI has designed a unique program to intensify education and data collection aimed at physicians and other healthcare providers across West Virginia. The goal is to help physicians improve diagnosis and to insure their access to the latest in treatment of the disease. The program will also make certain that physicians and providers know how to connect families and caregivers to vital support networks in communities across the state.

"To help those battling memory disorders, we need to arm our entire network of health care providers and caregivers with the tools they need to diagnose, treat and care for them," said Senator Jay Rockefeller, founder of the Blanchette Rockefeller Neurosciences Institute at West Virginia University. "Through strong support of key groups in West Virginia, we will now be able to offer them education and information essential to carrying out this crucial mission. And I’d like to thank the West Virginia Cable Telecommunications Association and everyone involved for making it possible."

AORP will host live programs for physicians and other providers across the state beginning in October consisting of:

1. A continuing medical education program to help keep physicians informed and proactive in the latest diagnostic techniques and treatment;
2. A continuing medical education program to help physicians and other healthcare providers connect caregivers to local resources, education and support and ensure a better link between treatment and care; and
3. The first ever West Virginia Alzheimer’s Disease Registry to collect data on the disease across the state.

These live continuing medical education programs, led by the West Virginia Medical Foundation and presented in cities around the state by WVCTA, will intensify the education effort targeting physicians.

"We are proud to bring the Alzheimer’s Outreach and Registry Program at the Blanchette Rockefeller Neurosciences Institute to physicians and other healthcare providers across West Virginia as a component of our long-standing commitment to the people of this state," said Jerry Kent, Chairman and CEO of Suddenlink Communications on behalf of the West Virginia Cable Telecommunications Association. "We applaud Senator Rockefeller and others for their leadership to improve Alzheimer’s research, education, and outreach."

West Virginia is only the third state in the country to create an Alzheimer’s Disease Registry. The registry will allow physicians to input data on individuals and the disease that in turn will help better allocate state resources and support research.

"Today, there is no reliable early diagnosis for Alzheimer’s disease, and there is no cure or consistently reliable treatment," said William Neal, M.D., pediatric cardiologist and board member of the West Virginia Medical Foundation. "This puts a special burden on physicians to stay up on the latest advancement in care, and to understand community resources available that can help caregivers."

The Alzheimer’s Association, West Virginia Chapter and West Virginia Bureau of Senior Services will provide critical educational and support resources and services for the outreach program.

"It is imperative that physicians and families recognize the early warning signs of Alzheimer’s. Early diagnosis is critical," said Jane Marks, Executive Director of the Alzheimer’s Association, West Virginia Chapter. "In addition, physicians can play a key role in empowering individuals with the disease and their caregivers by connecting them to available support and education resources. Until we find the cure, knowledge and support will enable those facing the challenge of Alzheimer’s to navigate this difficult journey knowing they are not alone."

"As the state’s population continues to age, the impact of Alzheimer’s disease becomes more profound," said Dr. Sandra Vanin, Commissioner of the West Virginia Bureau of Senior Services. "These initiatives will help those of us at the state level to better understand the needs of Alzheimer’s families and to allocate our resources as effectively and efficiently as possible."

The Alzheimer’s Association estimates that the disease costs West Virginia families and caregivers who care for those with Alzheimer’s disease more than $800 million in direct costs and lost wages annually (2009 Facts and Figures report).

Governor Joe Manchin III has signed laws passed by the West Virginia Legislature to contribute $1 million toward the outreach program and $100,000 to create the Alzheimer’s Disease Registry. The Benedum Foundation has contributed $200,000 to further Alzheimer’s research and outreach at the Blanchette Rockefeller Neurosciences Institute at West Virginia University.

WVCTA will lead the production of an education video, in coordination with all of the partners, that will tell the stories of Alzheimer’s families and caregivers through their individual experiences, in ways that address the urgent gap in understanding between physicians, patients and caregivers. These will be made available to every physician in West Virginia.

Manchin Signs Bill to Create Alzheimer's Disease Registry
April 3, 2006

CHARLESTON, WV — West Virginia Governor Joe Manchin IV gave final approval Monday (April 3) to a bill that creates a state Alzheimer's disease registry at West Virginia University.

"With this legislation, West Virginia takes the lead in developing reliable information about how Alzheimer's disease affects individuals, families, communities and the state as a whole," Manchin said. "I applaud the legislators who made this possible, particularly Senator Roman Prezioso, and thank West Virginia University for taking on this tremendous responsibility."

West Virginia is only the third state to create an Alzheimer's registry; the others are New York and South Carolina.

The bill, SB 112, requires WVU to establish the registry and provide safeguards for the confidentiality of Alzheimer's patients. The registry will collect information on Alzheimer's cases from hospitals, doctors and other caregivers, and create reports - without identifying data - that will allow policymakers and researchers to develop more effective means of dealing with the growing number of Alzheimer's cases in the state. Prezioso was the lead sponsor of the measure in the West Virginia Legislature.

Robert D'Alessandri, M.D., president of the Blanchette Rockefeller Neurosciences Institute (BRNI) at WVU, Bernard Schreurs, Ph.D., a BRNI and WVU researcher, and Richard Ham, M.D., director of the WVU Center on Aging, joined Manchin at a signing ceremony in the State Capitol.

"We have been seeking the ability to create a statewide Alzheimer's registry for several years," Dr. D'Alessandri said. "It's clear that this disease has a profound effect on thousands of West Virginia families. But without current, comprehensive data, it is difficult to plan effectively or allocate resources at the state level."

Jane Marks, executive director of the Alzheimer's Association, West Virginia Chapter, also expressed approval of the registry. "We hope the state of West Virginia will become the benchmark in doing all that we can to assist families and find the cure," she said. "This is one more step in that direction."

More information please visit http://www.wvadr.hsc.wvu.edu/proceduralRule/.