Scientists launch Long-Term study to unravel mysterious liver disease

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

* INCLUSION CRITERIA: In order to be eligible to participate in this study, an individual must meet all of the following criteria: * Male or female, aged \>= 18 years of age, and minors 12-17 years of age. * Women of childbearing potential must agree to use birth control unless they are menopausal or had hysterectomy. * Known diagnosis of NCPH, or to be at the risk for NCPH by virtue of underlying disease processes such as but not limited to; CGD, SCD, Mastocytosis, CVID, CF, and CHF. EXCLUSION CRITERIA: An individual who meets any of the following criteria will be excluded from participation in this study: * Pregnancy. * Evidence of other forms of liver disease that typically result in cirrhosis. * Evidence of active Chronic Hepatitis B infection as defined by the presence of hepatitis B surface antigen (HBsAg) in serum and elevated HBV DNA (\>10,000 IU/mL). * Hepatitis C as defined by the presence of hepatitis C RNA in serum. * Evidence of other liver disease such as primary sclerosing cholangitis, primary biliary cirrhosis, Wilson s disease, autoimmune hepatitis as defined by either liver histology or laboratory abnormalities. * Hemochromatosis as defined by presence of 3+ or 4+ stainable iron on liver biopsy or homozygosity for C282Y. Patients with iron saturation indices of \>45% and serum ferritin levels of \>300 ng/ml for men and \>250 ng/ml for women will undergo genetic testing for hemochromatosis. * Bile duct obstruction as suggested by imaging studies done within the previous six months. * The presence of cirrhosis confirmed by liver biopsy. * Active substance abuse, such as alcohol, inhaled or injection drugs within the previous one year (assessed during subject interviews by subject self-report). * Evidence of hepatocellular carcinoma; either alpha-fetoprotein (AFP) levels greater than 50 ng/ml (normal \<6.6ng/ml) and/or ultrasound (or other imaging study) demonstrating a mass suggestive of liver cancer. * Evidence of cholangiocarcinoma as suggested by liver histology. * Any other severe condition, which in the opinion of the investigators would impede the patient s participation or compliance in the study. * Inability to comply or give written informed consent.