The National Institutes of
Health (NIH) advocates are making available to the public the results and accomplishments
of the activities that it funds. NIH assures that research resources developed with public
funds become readily available to the broader research community in a timely manner for
further research, development, application, and secondary data analysis in the expectation
that this will lead to products and knowledge of benefit to the public health. Resources
expected to be shared include data and biological materials collected and pertinent
methods of analysis. The National Institute on Aging (NIA) supports the NIH policy that
whenever possible research resources be made available to qualified investigators.
Compliance with these policies is an important requirement of an NIH award.
National Institute on Aging
Genetics of Alzheimer's Disease Data Storage Site (NIAGADS)
NIA has established the National Institute on
Aging Genetics of Alzheimer's Disease Data Storage Site (NIAGADS)
as a national genetics data repository in order to
facilitate access by qualified investigators to genotypic data for the study of the
genetics of late-onset Alzheimer's disease. It is the policy of the NIA that all Genetic
Data derived from NIA funded studies for the genetics of late-onset Alzheimer's disease be
deposited at NIAGADS or another NIA approved site or both whenever possible. Such Genetic
Data shall be made available as soon as possible, but no later than upon acceptance of a
subset of data for publication or public disclosure of a submitted patent application,
whichever is earlier. For example, after publication of preliminary reports of the work, a
subset of phenotypic data and Genetic Data is to be shared with other investigators for
secondary analysis. Generally, this will be a subset of data, or data that are made public
and will not typically include the full range of Associated Phenotypic Data being
collected in genetic studies. NIAGADS along with other NIA approved sites will make these
Genetic Data and Associated Phenotypic Data available to qualified investigators in the
scientific community for secondary analysis in accordance with standards established by
the NIA.
National Cell Repository for
Alzheimer's Disease (NCRAD)
NIA has in place a Genetics Initiative to assist in the
identification of the risk factor genes for Alzheimer's disease. To this end, NIA supports
a National Cell Repository for Alzheimer's Disease (NCRAD) at Indiana University (www.ncrad.org) and invites
investigators to utilize this resource. More information can be obtained from the web site
or through an NIA Neuroscience and Neuropsychology of Aging program official. A Cell Bank
Advisory Committee (CBAC) to NCRAD; the coordinator of the NIA Genetics Initiative; NCRAD
staff; and NIA staff have jointly established:
1). eligibility criteria,
2). guidance on protection of human subjects, confidentiality, and compliance with
relevant laws and regulations, and
3). operating procedures for the sharing of biological samples and Associated
Phenotypic Data.
Associated Phenotypic Data is defined as deidentified data on
family structure, age, sex, vital status, psychopathology, diagnosis, and other clinically
relevant associated phenotypic information, stripped of all personal identifiers and thus
unlinkable to the individuals from whom they were obtained.
NIA has established NCRAD as a national repository in order
to facilitate access by qualified investigators to samples and Associated Phenotypic Data
for the study of the genetics of late-onset Alzheimer's disease. Therefore, it is the
policy of the NIA that useful specimens and Associated Phenotypic Data for the genetics of
late-onset Alzheimer's disease be deposited at NCRAD whenever possible. Qualified
investigators will be able to use biological samples and Associated Phenotypic Data
supplied by NCRAD. Application for use will be made directly to NCRAD. Investigators
utilizing NCRAD samples are expected to deposit their genetic data at NIAGADS.
Related Links
NIA Sharing Policy and Guidance for the Genetics
of Alzheimer's Disease
NIH Blueprint Resource Sharing for Neurogenetics - this references
NCRAD & NIAGADS
Alzheimer's Disease Education
& Referral Center - ADEAR
Alzgene - Alzheimer Research Forum - Published
AD Candidate Genes
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