With shears in hand, Scottsdale hairstylist Tony Ross had never wanted customers to know he has Parkinson’s disease.
But after more than a decade of controlling hand tremors with a combination of medications, Ross decided the time was right to share his story — in a new online survey. The data will become part of a nationwide Parkinson’s disease registry launched this month by the Muhammad Ali Parkinson Research Center at Barrow Neurological Institute in Phoenix.
"A lot of (people with Parkinson’s) want to hide it. They’re ashamed to say they have Parkinson’s," said Ross, 74, who still cuts hair after retiring and selling his hairstyling business, the Chicago Hair Co. "I’m not afraid of it."
Researchers want 20,000 of the nation’s estimated 1.5 million people with Parkinson’s disease to join Ross in contributing to the registry — the first and largest of its kind. Researchers hope to draw ground-breaking conclusions about possible causes of disease, treatment costs and Parkinson’s impact on patients.
The database could lead to better treatment techniques, authorities said, and help researchers identify candidates for clinical trials.
"There are a lot of things we don’t know about Parkinson’s," said Dr. Holly Shill, a movement disorder neurologist for Barrow. "What we’re hoping comes out of this is we’ll start to see trends across the country."
Until now, most Parkinson’s research has focused on certain geographical areas or types of patients with the disease. With information from a wide spectrum of people, researchers may be able to pinpoint what triggers the onset of Parkinson’s. Scientists suspect the disease could come from a genetic predisposition to Parkinson’s coupled with unknown environmental factors, such as exposure to certain substances or materials.
The database is also expected to provide the first broad indication of the costs of Parkinson’s and how people are living with the disease — information that is largely unknown because patients are often cared for at home.
"The only way to do it is by talking with patients themselves," Shill said.
The free, 19-page survey includes questions about a patient’s residence, symptoms, education level, occupation, health insurance coverage, medical history, quality of life, sleep, and depression. Patient privacy is protected and respondents will be asked to update their questionnaire every six months.
To access the survey, visit www.parkinsonregistry.org or call (877) 287-7122 for a copy.
"The only way they’re going to cure this is with a lot of research," Ross said. "Like anything else, you’ve got to dig into it."