A bill that would establish a registry of FTD diagnoses in New York State was reintroduced in January by New York state Sen. Michelle Hinchey.

Sen. Hinchey and AFTD’s Director of Advocacy and Volunteer Engagement, Meghan Buzby, were interviewed March 23 on the CBS affiliate in Albany discussing the proposed registry.

“The bill is important to us because we don’t have the epidemiological data on FTD,” Sen. Hinchey said. Because a clinical FTD diagnosis takes several years on average, it’s impossible to get an accurate case count at any point in time, she noted. But a registry is a key first step.

“We believe that [FTD] is much more prevalent than we know it to be, but we don’t have any of the data,” said Sen. Hinchey. “So having doctors anonymously report how many patients they’re seeing that have FTD, and starting to get the understanding of the scale, will help raise awareness. Having a directive from the state will help raise awareness in the medical community as well, which is incredibly important.”

Sen. Hinchey’s bill passed the New York Senate last May, but the legislative term expired before the Assembly could vote on it.

The proposed FTD registry will help educate doctors on this often-misdiagnosed disease, provide insight into the number of FTD diagnoses across the state, and create a public database of services and available resources for families facing an FTD diagnosis.

Motivated by personal experience—her father, former U.S. Congressman Maurice Hinchey, had primary progressive aphasia and died in 2017—Sen. Hinchey has emerged as the foremost FTD advocate in the New York State Legislature. In her inaugural year in office, she introduced a Senate resolution formally designating FTD Awareness Week, making New York the first state in the country to do so. This legislative initiative has evolved into an annual Senate observance and has begun to inspire other states to designate their own FTD Awareness Weeks.

Hinchey is optimistic about the future of her proposed FTD registry. “We’re working with [the Assembly] on a couple of amendments,” she said. “I’m really hopeful and hearing really positive feedback that we should be able to get somewhere this year.”

Given anticipated staffing and funding cuts at the federal level, Hinchey and Buzby pointed to the importance of states’ actions. “This would send a message about how states are stepping up in this moment to actually support healthcare research and healthcare information,” Hinchey said.

Buzby added that in this uncertain environment, AFTD is redoubling its advocacy and policy efforts in Washington. “There’s a lot of really great research happening through the National Institutes of Health that we want to see continue.”

“We have to do more” at the state level, Hinchey said. “The same way that the state has a stake in the Parkinson’s registry, we’ve done this with other types of dementias, specifically Alzheimer’s and others. We want to raise a bit more attention on FTD, specifically.”

How State FTD Registries Differ from the FTD Disorders Registry

Despite sharing the word “registry,” the proposed New York FTD registry differs significantly from the existing FTD Disorders Registry. The former would require clinicians to report all new FTD diagnoses—an important first step to establishing FTD’s actual prevalence in the state. The FTD Disorders Registry, meanwhile, is global in scope, and relies on voluntary participation from persons diagnosed and their loved ones, thus ensuring their lived experiences are incorporated into FTD research.

Join the FTD Disorders Registry by visiting FTDregistry.org.