EPIC Obs includes longitudinal data and clinical specimens from children with cystic fibrosis (CF) age 12 and under who were enrolled at 55 U.S. CF centers beginning in 2004. This includes:

  • Clinical data reported to the CF Patient Registry plus study-specific encounter and annual family survey data collected during years 1–10
  • Serum samples collected annually and ongoing
  • P. aeruginosa isolates from annual respiratory samples during years 1–5 and isolates submitted during years 6–10 on a sub-cohort
  • S. aureus isolates from annual respiratory samples during years 1–5
  • DNA: one-time collection
  • Plasma and buffy coat: samples collected annually beginning in 2014
  • Sequence data available from dbGAP  

Ancillary Studies

Investigators with ancillary studies are welcome to use EPIC Obs data and specimens. All ancillary study applications that propose to use these samples must be reviewed by the EPIC Scientific Advisory Committee (SAC). Please contact SAC co-chairs Drs. Margaret Rosenfeld or Wayne Morgan to discuss your ancillary study application. Access information is listed below.

Clinical data

Investigators seeking access to archived data should apply directly to the Therapeutics Development Network Coordinating Center (TDNCC). Please email the TDNCC for an initial consultation.

Bacterial isolates

Investigators seeking access to bacterial isolates should apply directly to the TDNCC. Please email the TDNCC for more information.

Serum or DNA

Investigators seeking access to serum or DNA should apply directly to the Cystic Fibrosis Foundation (CFF). Information about the application process can be found on the CFFT Biorepository web page.

Funding Resources

Investigators are encouraged to seek funding for ancillary studies from the CFFT and the National Institutes of Health (NIH). Other funding agencies may also be interested in ancillary study applications. We encourage investigators to contact Drs. Margaret Rosenfeld or Wayne Morgan to discuss their ancillary study proposals.