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Government Funding Lapse

Because of a lapse in government funding, the information on this website may not be up to date, transactions submitted via the website may not be processed, and the agency may not be able to respond to inquiries until appropriations are enacted. The NIH Clinical Center (the research hospital of NIH) is open. For more details about its operating status, please visit  cc.nih.gov. Updates regarding government operating status and resumption of normal operations can be found at OPM.gov.

Participation

This research study is recruiting subjects of any age including those with a known or suspected DICER1-related disease and their unaffected family members.

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.

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.

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