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)
Institutional Certification for Alzheimer’s Disease and Related Dementias (ADRD) Studies (PDF)
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
| 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 subjects 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