Cases of liver disease lost in the health system: a call to action.

We recently reported our experience searching for patients with primary biliary cholangitis (PBC) who were lost in the health system. Our search of databases in 4 hospitals, 3 of which were tertiary institutions, revealed that sufficient data were available to ensure a reliable diagnosis (i.e., cholestasis, positive antimitochondrial antibody titer, and no other liver disease) in 14.3 % (100/697) of PBC cases. However, patients remained undiagnosed, thus missing an opportunity to start early treatment and follow-up. Even more strikingly, of 30 rescued patients, 27 % had an elastography result indicating a poorer prognosis (> 9.5 kPa).