Table 2.

Characteristics of PACGENE Consortium registry data collection sites, numbers of patients screened, probands, and relatives enrolled in registry

Data collection siteYear data collection initiatedRecruitment method(s)No. pancreatic cancer patients screenedNo. PACGENE registry probands*No. PACGENE registry relatives
Dana-Farber Cancer Institute2004S, HR3691044
Johns Hopkins University1994S, HR, I4,538168799
Karmanos Cancer Institute2001S, HR, I3172184
Mayo Clinic2000S, HR, I2,038101512
M.D. Anderson Cancer Center2002S, HR, I4,5965799
Creighton University1990HR3095684
University of Toronto1998S, HR98063290
Total13,1474761,912
  • Abbreviations: S, screen all pancreatic cancer patients for family history at institution; HR, high-risk clinic and physician referrals; I, Internet.

  • * Pancreatic cancer probands are entered into the PACGENE registry if they have at least one other blood relative with pancreatic cancer and blood sample.

  • John Hopkins University pancreatic cancer probands are entered into the PACGENE registry if they have one first-degree relative with pancreatic cancer, and there is a blood sample available on at least one pancreatic cancer case in the family.