Manchin Signs Bill to Create Alzheimer’s Disease Registry

CHARLESTON, W.Va. – 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."

- WVU -

For more information:
Bill Case, HSC News Service, (304) 293-7087

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