Privacy Narrative

Date
8/16/2021

Information Collection Request - Privacy Narrative
Sudden Death in the Young Case Registry

Title: ______________________________________________________________________________________
Carri Cottengim
Point of Contact: _____________________________________________________________________________

Description
CDC is not funding collection of PII. CDC funds awardees of the Sudden Death in Young (SDY) case
registry to perform enhanced clinical reviews of death cases and complete SDY modules and in the
National Fatality Review-Case Reporting System (NFR-CRS). Awardees conduct this additional
clinical review of SDY cases according to a CDC established protocol, and they enter standardized
variables into the SDY module.
The NFR-CRS is an existing system for states and jurisdictions to enter information on all causes of
child death. This system is hosted by the National Center for Fatality Review and Prevention (NCFRP)
at the Michigan Public Health Institute (MPHI). NFR-CRS does contain PII/IIF, although not in the the
SDY module funded by CDC. The collection of PII/IIF is independent of CDC funding. Data are
completed in modules; the SDY module is a component of the system that any state can use.
MPHI has formal security and privacy policies in place and staff comply with institutional standard
operating procedures related to subject confidentiality, information security, and safe data collection
practices. Access to NFR-CRS is password-protected, changing every 6 months. NCFRP controls
and monitors access and provides training for users.
The NCFRP assigns a unique, auto-generated identifier to reference individual cases and creates a
de-identified data set. CDC receives de-identified data sets from funded jurisdictions on a quarterly
basis via a secure file transfer protocol site. The data are stored in a secure location that only CDC's
SDY Case Registry team can access. CDC analyzes aggregated data and assesses data quality for
completeness (including missing and unknown responses), timeliness, and representativeness. CDC
shares findings from these analyses with SDY awardees and provides technical assistance to SDY
awardees to improve data quality. CDC agrees not to release nor permit others to release or access
the data set or any part of it to anyone other than CDC staff who have signed a data usage
agreement. CDC has determined the SDY Case Registry is public health practice surveillance and
does not require IRB review or informed consent for participation. The Privacy Act does not apply.

Does this ICR request any PII?

Yes

✔ No

If yes, describe: _____________________________________

Does this ICR include a form that requires a Privacy Act Statement?
Does this ICR require a PIA?

Yes

✔

No

Yes

✔

No

If yes, does a signed PIA already exist?

C/I/O Approval
Associate Director for Science

Rachel
Kaufmann -S
Comments:

Digitally signed by Rachel
Kaufmann -S
Date: 2021.09.14
10:27:43 -04'00'

Information Systems Security Officer

Cynthia
Allen -S

Digitally signed by
Cynthia Allen -S
Date: 2021.09.14
10:33:45 -04'00'

Yes

No