CHARLESTON, W.Va. — Legislation to create a Parkinson’s’ registry for West Virginia is now on Governor Jim Justice’s desk. When he signs it, it will be a huge victory for those advocating for research and a cure for the ailment nationally.
“This is a big deal for the Parkinson’s community, not only for West Virginia, but for the nation. This is a collaborative with the Michael J. Fox Foundation, WVU, and the state Parkinson’s’ group,” said George Manahan who strongly advocated for the bill.
Manahan said the registry will allow researchers at WVU, Marshall, and CAMC to have access to information which is currently not known. It will also make that information available nationally. The more data available, the more researchers can determine potential trends and potential causes of the illness.
“Right now there is no registry for people with Parkinson’s. We’re only guessing how many people have Parkinson’s disease. We’re going to look for clusters. Are they in a certain location or work in a certain industry? It will allow us to find information we just haven’t had before,” he said.
Participation by patients is voluntary, but Manahan and researchers are hopeful everybody diagnosed with the illness will be willing to contribute their information to help growing the database and widen the search for a cure.
The bill calls for establishment of an advisory panel. It will include doctors and patients from WVU, Charleston Area Medical Center and Marshall University. Those three healthcare outlets are the hub of Parkinson’s research and treatment in West Virginia. Although four states currently collect data on Parkinson’s patients, the data collected isn’t the same and isn’t comprehensive. West Virginia will be the first state to collect identical data identified by national researchers as what they need to advance their search for a cure.
“Hopefully West Virginia will be able to lead the way on helping find a cure,” Manahan said.