Data Use Limitations

NIAGADS follows the NIH GDS Policy for sharing data. Submitting Institutions are required to provide Institutional Certification for all subjects in their dataset. The Institutional Certification form should be used when submitting data to NIAGADS.

When requesting data, your application and research use are reviewed for all consent levels below.

NIH Policy (NOT-OD-19-023): Guidance on how to fill out restrictions on Individual vs. Genomic Summary Results. (PDF)

Data Use Limitations Definitions

GRU	Use of the data is limited only by the terms of the Data Use Certification.
HMB	Use of the data is limited to health/medical/biomedical purposes, does not include the study of population origins or ancestry.
DS	Use of the data must be related to the specified disease (see diseases below).

Data Use Modifier Definitions

IRB	Requestor must provide documentation of local IRB approval.
PUB	Requestor agrees to make results of studies using the data available to the larger scientific community.
NPU	Use of the data is limited to not-for-profit organizations.
MDS	Use of the data includes methods development research (e.g., development of software or algorithms)
GSO	Use of the data is limited to genetic studies only.

Disease Specific Definitions

NEURO - Neurological Disorders
AGEBRMEM - Aging, Brain, Memory
AGEADLT- Aging and Adult
ND - Neurodegenerative Disorders
DEMND - Dementia/Neurodegenerative
ADRD - Alzheimer’s Disease and Related Dementias
ADRDAGE - Alzheimer’s Disease and Related Dementias and Aging
ADRDMEM - Alzheimer’s Disease and Related Dementias and Memory

Consents for all subjects available in DSS

All categories listed below include IRB-PUB modifiers:

All ADSP applications are considered as human subject studies and require IRB approval.
All ADSP applicants agree to the NIA AD Genetics Data Sharing Policy and the NIAGADS Data Distribution Document. These documents ensure that the requestor agrees to make results of studies using data available to the larger scientific community.

General

GRU-IRB-PUB
GRU-IRB-PUB-NPU
GRU-IRB-PUB-MDS

Health/Medical/Biomedical

HMB-IRB-PUB
HMB-IRB-PUB-NPU
HMB-IRB-PUB-MDS
HMB-IRB-PUB-NPU-MDS

Neurological-Disease Specific

DS-NEURO-IRB-PUB
DS-NEURO-IRB-PUB-NPU
DS-ADRDMEM-IRB-PUB-NPU

Aging

DS-AGEADLT-IRB-PUB
DS-AGEADLT-IRB-PUB-NPU

Neurodegenerative Disease

DS-ND-IRB-PUB
DS-ND-IRB-PUB-MDS
DS-ND-IRB-PUB-NPU

Dementia in all Age Categories

DS-DEMND-IRB-PUB
DS-DEMND-IRB-PUB-NPU

Dementia in Aging

DS-ADRDAGE-IRB-PUB
DS-ADRD-IRB-PUB
DS-ADRD-IRB-PUB-NPU

Genetic Studies Only

HMB-IRB-PUB-GSO
DS-AGEBRMEM-IRB-PUB-GSO
DS-ADRD-IRB-PUB-NPU-GSO