Northwest Tribal Data RepositoryUpdated

Victoria Warren-Mears

Purpose of the Repository

O The purpose of the repository is to create a library of the data from research projects conducted by the EpiCenter, Northwest Tribal College, and any data tribes would wish to have stored on their behalf that is both secure and Tribally controlled.

O This meets a Federal Government requirement which states that if research is Federally Funded data must be made available.

Types of Data to Be Stored

O Data bases from NPAIHB EpiCenter research projects (de-identified number based data)O NO body tissue samples are to be

storedO Data stored is the data needed to

answer the research questions proposed in the original research study only.

Three Options are Available

1. Board repository2. University based repository3. Umbrella organization data

repository

Options for consideration

The NPAIHB's Data Repository Planning Group examined three different possible options for the NPAIHB Data Repository's structure.O NPAIHB staff develops, establishes, and maintains

its own Data Repository.O The NPAIHB contract with an existing,

experienced, data repository located at or in a university.

O Contract with an existing, experienced, data repository of an umbrella organization that permits each organization within the umbrella to control its data in the repository.

Costs of OptionsO Total Cost Estimate for In-House

NPAIHB developed and run data repository. *

Initial Establishment = $330,201Annual Cost = $125,000

O Umbrella Organization EstimateO Total Cost = $5,000 per year for the

repositoryO NPAIHB staff repository manager =

$50,000 per year.* See Excel spreadsheet

Role of the Repository Manager (Umbrella Organization Scenario)

O To ensure that any request for research data for secondary analysis are properly process including:O Tribal approvals submittedO PAO-IHS IRB approval

O To request data pull and prepare data for use by requestor

O To ensure data is properly destroyed following approved use.

RecommendationsO Develop a business plan for a NW

Tribal Data Repository, using the information presented.

O Supplement business plan with carryover and apply for grant funding.

O To meet funder requirements in the short term (1-2 years) use umbrella organization.

Tribal Delegation Discussion