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 below should be used when submitting data to NIAGADS:

Institutional Certification for Alzheimer’s Disease and Related Dementias (ADRD) Studies (Word)

When requesting data, your application and research use is 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

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

Data Use Modifier Definitions

IRBRequestor must provide documentation of local IRB approval.
PUBRequestor agrees to make results of studies using the data available to the larger scientific community.
NPUUse of the data is limited to not-for-profit organizations.
MDSUse of the data includes methods development research (e.g., development of software or algorithms)
GSOUse 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:

General

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

Health/Medical/Biomedical

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

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