Part 62 - Alzheimer's Disease And Related Disorders Registry

Effective Date: 
Thursday, July 9, 1987
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Statutory Authority: 
Public Health Law, Section 2004

Section 62.1 - Filing of reports

Section 62.1 Filing of reports. All cases or suspected cases of Alzheimer's disease and related disorders shall be reported to the Commissioner of Health by physicians, hospital administrators, laboratories, or persons in charge of the State institutions, pathologists, coroners and medical examiners. Reports shall be made in a manner and on forms prescribed by the commissioner. Penalties for not reporting are provided in section 12 of the Public Health Law.
 

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Section 62.2 - Confidentiality

62.2 Confidentiality. Reports of Alzheimer's disease and all related disorders shall be kept confidential in accordance with Public Health Law, section 206.1(j).

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Section 62.3 - Valid scientific research

62.3 Valid scientific research. For the purposes of this Part, valid scientific research shall mean studies conducted for the purposes of etiological research, discovering effective treatment of the disease, determining if there is a genetic factor in disease occurrence, or other basic epidemiological research activities. Research may be undertaken by any person licensed under title VIII of the Education Law to perform diagnosis, treatment, medical services, prescription or therapeutic exercises with regard to or upon human beings, or any person deemed appropriately competent and qualified by a human research review committee as provided by article 24-A of the Public Health Law.

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Section 62.4 - Access to confidential file

62.4 Access to confidential file. A confidential file of the reported Alzheimer's and related disorders patients will be entered into a computer system. Persons seeking access to the file for scientific research shall complete a form stating the requester's name, affiliated organization and a narrative delineating research purpose. The requester shall inform the Department of Health if he/she plans to make patient contact as part of the research. The requester shall guarantee in writing the confidentiality of all material reviewed from the Alzheimer's disease registry, and any patient or family contacts. The Department of Health will consult the requester's references and his/her supervisor. After the aforesaid review, the commissioner shall determine whether to give the requester access to the registry.
 

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