What is involved?
Those who join the study will be asked to:
- Complete questionnaires about individual/family medical history
- Give permission for the study team to obtain medical records
- Give a blood or saliva specimen for genetic testing, if necessary
Over time, participants may be asked to complete follow-up questionnaires in order to update medical and cancer information.
Some participants may be asked to come to the NIH Clinical Center in Bethesda, MD, for evaluation.
Participants will receive education and counseling on what is known about changes in the DICER1 gene and cancer risk, as well as an opportunity to learn their genetic testing results.
Although the study does not offer treatment, the study team can discuss treatment options with participants and their physician (at the participant’s request). The study will also provide help in establishing care with the appropriate physicians, as needed. Participants should remain under the care of their regular doctor while participating in the study.
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