Natural History of Noncirrhotic Portal Hypertension

This observational study aims to understand how noncirrhotic portal hypertension (NCPH) develops and progresses over time. NCPH is a liver condition where blood pressure in the liver's vessels increases, but it's not caused by cirrhosis. Researchers want to identify new ways to monitor patients, prevent complications, and help with transplant decisions. You might be able to join if you are 12 years or older and have NCPH or are at risk for it. The study is ongoing and plans to include up to 400 participants. There are no specific interventions or drugs being tested in this study.

Study design: This is an observational study that plans to enroll up to 400 participants. It is not testing any specific interventions.
What's involved: You will have 2 screening visits to see if you have or might develop NCPH. The study is ongoing, so the total duration of your participation is not specified.
Compensation: Not stated in the trial record.
Follow-up: The primary endpoint of studying the natural history of noncirrhotic portal hypertension is measured at "Ongoing," so follow-up is continuous during the study.

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Natural History of Noncirrhotic Portal Hypertension

Recruiting

Not specifiedAges 12+Observational

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

~400 participants

Updated 2026-08-28 on ClinicalTrials.gov

At a glance

Recruiting sites

1 of 1 listed site is recruiting right now

RecruitingSuspended, closed, or not yet open

What they're measuring

To study the natural history of non cirrhotic portal hypertension. It is an ongoing study.

Measured over Ongoing

Conditions

Cystic Fibrosis

Immunologic Deficiency Syndrome

Turner Syndrome

Congenital Hepatic Fibrosis

Idiopathic Non-Cirrhotic Portal Hypertension

Where it's being run

1 sites across 1 states

Maryland1

Study leadership

Theo Heller, M.D. · PRINCIPAL_INVESTIGATOR · National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

Who to contact

Jaha F Norman-Wheeler

[email protected]

(301) 435-6122

Email the study team

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Do you actually qualify for this trial?

Add a private profile and we'll compare every criterion below against your situation — and tell you which ones are met, uncertain, or excluding.

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Eligibility criteria

Inclusion

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

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.

What this trial measures

To study the natural history of non cirrhotic portal hypertension. It is an ongoing study.Ongoing
natural history study

Trialytics