What is a clinical study?

A clinical study involves research using human volunteers (also called participants) and is intended to add to medical knowledge. There are two types of clinical studies: clinical trials and observational studies. The PPB DICER1 Syndrome Study is an observational study.

In an observational study, investigators assess health outcomes in groups of participants according to a protocol or research plan.


Patient privacy is our top priority. NCI will share your information only with persons directly involved in the study unless you give us explicit permission otherwise. No personal identifying information will be released or published.


All study-related medical expenses and travel costs to the NIH Clinical Center are paid for by the NCI.

Other Clinical Studies at NCI

NCI carries out many clinical studies of families that have inherited syndromes or genetic changes that increases their risk for cancer. Find out more about Clinical Studies.

Find out more about Clinical Trials at NCI.

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How can I join?

All individuals with PPB or related tumors and conditions and their family members are encouraged to participate.

Phone: 1-800-518-8474 to speak with the referral nurse
Email: NCI.PPB@westat.com