About the New York State Dementias Registry
What is the Dementias Registry?
The registry collects information on individuals with dementia reported to the NYSDOH. The data is used to better understand dementias and their impact on individuals, families and society.
What is the Dementias Registry used for?
The data is used to better understand dementias and their effect on individuals, families and society and for research, planning and evaluation. The Registry can monitor patterns of illness and identify areas in need of services. Data has been used in studies of the needs of dementia patient caregivers.
What does the Dementias Registry do to protect privacy?
Information reported to the Dementias Registry is confidential. Strict procedures protect patients' privacy. All employees are trained to handle confidential information. Strict policies also guide the release of data to outside researchers. The Health Department's Institutional Review Board reviews all research studies to protect patient rights. Statistics are only released when numbers of patients are large enough to guard against revealing confidential information.
How long has the Dementias Registry been collecting information on dementias?
The Dementias Registry was established in 1986 by state law. South Carolina is the only other state with a dementias registry.
What information does the Registry collect?
A small amount of information is collected about the patient, the kind of dementia and other illnesses. Information includes age, gender, race, and residence. Medical information may be collected as part of special studies of dementias.
Where do reports on individuals with dementias come from?
Reports are received mainly from hospitals and nursing homes. Reporting is required by public law. Hospital reporting is made through the Statewide Planning and Research Cooperative Systems (SPARCS) link to www.health.state.ny.us/statistics/sparcs/ . Nursing home reporting is made through the Minimum Data Set. As more individuals with dementia are cared for in the community, NYSDOH is looking into ways to increase reporting on this group of individuals with dementias. Death certificate information is a very poor way to identify individuals with a diagnosis of dementia. People with dementia often die of other causes. Information about deaths is used to learn more about health needs faced by dementia patients in their last days.