title: Human subjects protection in a study of caregivers of community-residing persons with dementia.
abstract: This article describes the processes and methods used to protect human subjects during a joint research project undertaken by a state health department and a university-based research team. The use of a statewide registry to obtain a sample of primary caregivers of persons with dementia provided a unique opportunity for the research team to interview a large and representative sample of caregivers. At the same time, it raised complex issues regarding the privacy of the primary caregivers and the confidentiality of the patient data that were drawn from the state-operated mandatory dementia registry. Guidelines for enabling access while ensuring the privacy and confidentiality of the study participants are presented.
authors.affiliation: Alzheimer's Disease and Other Dementias Registry, New York State Department of Health, Albany, USA.
authors.forename: T
authors.initials: T
authors.lastname: Gerber
authors.forename: R W
authors.initials: RW
authors.lastname: Toseland
authors.forename: P
authors.initials: P
authors.lastname: McCallion
mesh_terms: D017028:Caregivers; D002986:Clinical Trials as Topic; D003219:Confidentiality; D003704:Dementia; D006805:Human Experimentation / Q000331:legislation & jurisprudence*; D006801:Humans; D007258:Informed Consent; D007407:Interviews as Topic; D009518:New York; D012042:Registries