DATA PORTAL


The PORCH study collects cognitive, behavioral, physiological, biofluids, and neuroimaging data from study participants to understand the epidemiology and risk factors of Alzheimer’s dementia in midlife. The study consists of a well-characterized population sample and provides various avenues for collaboration with external investigators on funded research studies and funding applications.


SUBMITTING A RESEARCH PROPOSAL

The PORCH study shares custom datasets, and in some circumstances conducts data analyses as part of funded research collaborations. In these collaborations, PORCH study designated investigator(s), who understand the study design and provide appropriate areas of expertise. Please submit an online request using a login for the study research portal. If you do not have a login, please register to set up an account. The PORCH Research Steering Committee will review your request based on a brief concept proposal and a decision for approval will be made. If your concept proposal is approved, your will work with one of the committee members to develop a full, more detailed proposal for review and approval. Interested investigators must obtain PORCH Steering Committee approval of their idea for research collaboration. Requests for custom PORCH datasets or analysis must meet these conditions:

  • The project does not compromise the confidentiality of participants or request for personal identifiers of any form.
  • The sole purpose of the study is research only
  • The research proposal is sufficiently detailed to determine if the proposed analysis is feasible.
  • Funding is available to support the collaboration of PORCH investigator(s) or study personnel and to cover the costs of dataset preparation (and analysis if relevant).
  • There is no overlap with current or planned research.
  • Each proposal would require a separate data use agreement and/or material transfer agreement.
  • All data transfer agreement and material transfer agreements will be strictly adhered to as required by local and federal laws.

More online tools for the study

To better understand the PORCH data, see the distributions of key variables and other information, tables, and graphs on the Data Elements & Questionnaires and Statistics pages. See also the PORCH Data Explorer data query tool.

Timeline from submitting a proposal to receiving the data or analysis results

The timeline varies depending on funding, the grant timeline, and staff availability. In general, it takes about 3-6 months to provide data or analysis results after a project begins, depending on complexity. Projects with ongoing planned collaboration will set their own timeline.