|Age:||-1 years or older|
|Keywords:||pleuropulmonary blastoma, sertoli-leydig cell tumor, DICER1 Syndrome, Cystic Nephroma, Wilms Tumor, Pineoblastoma, Renal Sarcoma|
If you choose to take part in this study, we will review the following information: - your medical records - family history - imaging studies - tumor tissue
The Registry will use this information to learn what may benefit future individuals with these conditions.
Additionally, tissue, urine, and blood samples may be used. This will help the study team understand more about these conditions and to develop new treatments. If a new or recurrent tumor or other condition is found during the time you are a part of this study, we will collect information on that as well. If you choose, the Registry may share information to guide your treatment or followup. These are not a part of Registry participation. It is available regardless of whether you choose to take part in the Registry.
Some individuals with these conditions will undergo surgery. If surgery is performed as a part of your health care, we ask for your permission to obtain tissue at the time of surgery. These deidentified tissues, which may be kept indefinitely, may be used to make “cell lines.” They may also be used in research in the possible development of new treatments.
Individuals who undergo blood draws and/or lumbar punctures may also be asked to provide an extra blood or cerebral spinal fluid sample. This will be done at specific time points such as at diagnosis of a new condition, during treatment or following completion of treatment.
Similarly, if an IV will be placed for a clinical purpose, such as a CT scan or MRI or surgery, we ask for your permission to obtain a blood sample at that time. This is usually done through the same needle used to place the IV. At these times you may also be asked to provide a urine specimen.
If previous blood or tissue samples are still available, we ask for your permission to retrieve these for additional studies.
GENETIC TESTING DICER1 testing is a clinical test. If applicable, consent for DICER1 testing will be reviewed with you separately. The Registry recommends participants receive genetic counseling both before and after the testing. It is possible that during your participation in the Registry, additional genes related to these tumors may be identified. We may learn expected or unexpected information from study of these samples. If these results are relevant to your future health or the health of your relatives, you will be notified. You may be advised to have additional testing to confirm the findings.
Have any questions or want to learn more? Leave your contact details below and the research team will reach out to you.