Clinical Data Resources

The Layton Aging and Alzheimer's Disease Center has developed a customized longitudinal relational research database using 4D.com. The database currently holds data for over 4,000 research subjects with an average of six evaluations each. 1,500 research subjects have six or more evaluations and the maximum number of evaluations per subject is 49.

The database includes the following types of data (including but not limited to NACC Uniform Dataset, or "UDS," data)

  • physical and neurological exam findings
  • neurocognitive test scores
  • demographics
  • health status
  • clinical diagnosis
  • personal and family history
  • positive/negative family history of dementia
  • age at service evaluations
  • age at onset, age at death
  • medications
  • laboratory tests
  • MRI volumetrics
  • genotypes (APOE, HLA, SNP genotyping)
  • neuropathology diagnosis and tissue inventory information (when available)

Consult

Hiroko Dodge, Ph.D. is available to consult with investigators regarding study design, sample size and power estimations, data analysis and related issues. Email hdodge@med.umich.edu.

Robin Guariglia, R.N., B.S.N., is available to consult with and assist Oregon Alzheimer's Disease Center investigators with data retrieval needs. Call 503-494-6977 or email guarigli@ohsu.edu.

How to Make a Request

To start the data or recruitment request process, please:

  1. Review our Research Repository Policy (revised August 10, 2018)
  2. Print and fill out one of the following forms completely, including your contact information:
    1. Request for Research Data
    2. Request for Subjects 

Requirements for Manuscripts Submitted for Publication

On all manuscripts submitted for publication, please remember to acknowledge support by the Layton Aging and Alzheimer's Disease Center if the publication resulted in any way from use of Layton Center resources and/or staff. This is extremely important to our continued funding. Sign the bottom of the data request form signifying that you have read and agreed to comply with our Research Repository Policy and then fax 503-494-7499 or email to Robin Guariglia. You can also send the information requested in the body of an email along with your written acknowledgement that you have read the policy and agree to comply.

Required Acknowledgements

One or more of the following acknowledgments must be added to all published articles. Please check with the Data Manager Robin Guariglia for the appropriate acknowledgements relevant to your publication.

  • Alzheimer's Disease Center Clinical Core (PI: Kaye; eIRB 725; supported by NIH P30 AG00801)
  • Oregon Center for Aging & Technology (ORCATECH; PI: Kaye; eIRB 2765; supported by NIH P30 AG024978)
  • ORCATECH Living Laboratory (OLL or "Living Lab"; PI: Kaye; eIRB 2765; supported by NIH R01 AG024059, P30 AG024978, P30 AG008017, Intel Corporation)
  • Bioengineering Research Partnership, Intelligent Systems for Assessing Aging Changes (BRP or ISAAC; PI: Kaye; eIRB 2353; supported by NIH R01 AG024059, P30 AG024978, P30 AG008017, Intel Corporation)
  • Oregon Brain Aging Study (OBAS; PI: Kaye; eIRB 361; supported by Department of Veterans Affairs, NIH P30 AG008017, M01 RR000334, UL1 RR024140)
  • Preventing Cognitive Decline with Alternative Therapies (informally called the Dementia Prevention Study or DPS; PI: Kaye; eIRB 687, supported by NIH P50 AT00066, P30 AG08017, M01 RR000334)