In addition to giving families and caregivers as much information as possible, it is critical that we continue to collect information on PPB, DICER1 and the related conditions.
We ask all families and physicians who use our information to allow us to collect data on every child with PPB, DICER1 and the related conditions. See Registry Enrollment. Every time we receive an inquiry, we will ask to follow the patient.
We collect three kinds of material on these patients:
Clinical data on the events of a child’s experience with PPB, DICER1 and/or related condition, as well as their treatment.
Specimens for scientific investigation. The PPB/DICER1 Registry has established a Tissue Bank in Washington DC. Please consider sending material for scientific investigation. These specimens would most often be pieces of tissue removed from the patient at the time of surgery, and thus represent no additional “invasion” or difficulty for the patient.
Genetic Study: When there is evidence of familial childhood cancer, we request blood samples from patients or families. Whenever this seems worthwhile, we will explain in detail the purpose for the request.
Patient’s Rights: There is another significant issue when collecting medical data - the protection of patient’s rights. Hospitals and physicians are extremely cautious about releasing medical data; many safeguards are in place. Each hospital has an Institutional Review Board (IRB) which looks at every research activity to make sure that patients are not exploited and that their privacy is protected. We never disclose a patient’s or family’s identity or location, but of course we do have to collect data patient by patient. In the information we release (in publications or in response to inquiries to this Registry), we refer to patients only by their age and sex.