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CDC’s View: How ATHN and CDC Fit Together

CDC’s View: How ATHN and CDC Fit Together. ATHN Data Summit August 1, 2008 Presenter: Roshni Kulkarni, M.D. HTC, CDC, ATHN Q&A. Who owns the data? Patients and their respective Hemophilia Treatment Centers (HTC’s) Who controls the data in the database

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CDC’s View: How ATHN and CDC Fit Together

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  1. CDC’s View: How ATHN and CDC Fit Together ATHN Data Summit August 1, 2008 Presenter: Roshni Kulkarni, M.D.

  2. HTC, CDC, ATHN Q&A • Who owns the data? • Patients and their respective Hemophilia Treatment Centers (HTC’s) • Who controls the data in the database • Patients consent for data to be released to ATHN and CDC • HTC though affiliation with ATHN and cooperative agreement with CDC • What is CDC’s role? • Continue congressionally mandated public health research that includes prevalence, incidence, blood safety, mortality & morbidity of various blood disorders • Will cooperative agreements to do surveillance of bleeding and clotting disorders with regions directors/HTC continue?? • Yes, the cooperative agreement is a congressional requirement

  3. Why does CDC support ATHN? • Desire to support groups that help build the national information technology (IT) infrastructure – PRESIDENTIAL MANDATE! • CDC values external partners and private/public partnerships • Assist with the expansion of the research capacity of the HTC network • Collaborate with ATHN to broaden the scope of research from clinical to public health/prevention. • Bottom line: Become an ATHN affiliate!

  4. HTC secure data (not available to ATHN/CDC) *ATHN data *CDC public health data *Data common to CDC/ATHN DATABASE * Consented data Parsing data

  5. CDC and ATHN: Multi-dimensional Relationship • Collaborator in creating ATHN as a community resource • Beneficiary of Lab Tracker (web) for UDC data collection • Secure hosting site for the centralized data base (i.e., under agreement with ATHN) • Potential user of the data collected • Funding source of cooperative agreements (e.g., Disaster Preparedness)

  6. ATHN & Affiliate Relationships to CDC ATHN CDC Hosting Agreement Affiliate Agreements HTC HTC HTC HTC HTC

  7. Post MOU: How Will Data Flow? CDC Dataset Central Server at CDC: Secure and Encrypted Data Patient HTC HTC Consented Patients Only Access by Certificate Only ATHN Non-identifiable Consented Limited Dataset Patient HTC Care Management (virtual HTC safe deposit boxes in a secure server vault) Public Health & Research (includes ATHN)

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