Childhood Cancer Registry for Familial and Sporadic Tumors (CCuRe-FAST)
The objective of the Childhood Cancer Registry for Familial and Sporadic Tumors (CCuRe-FAST) is to establish a centralized community resource that will aide in the identification, care and study of individuals who are at increased risk of developing childhood cancers or disease, so that an overall reduction in these cancers is achieved.
1) Collect pedigree information, epidemiological data and related biological specimens from patients with a family history of childhood cancers or disease, related childhood cancer syndromes, in order to provide a resource for future interdisciplinary and collaborative research.
2) Characterizing tumor samples at the time of acquisition for presence of abnormal biomarker (DNA, RNA or protein) features, and
3) Developing a cell line of cancer cells and normal tissue cells that are tested for sensitivity to a drug panel, and that can be stored for future studies.
pediatric cancers, pediatric disease and related genetic syndromes
1. The subject must be 0 to 79 years of age and have a cancer typical of children to consent to joining the registry. In the case of children, a legal guardian who is 18 years of age or older must be willing to provide consent in order for the child to participate in registry specimen collections. Where applicable, consent from both parents will be sought prior to participation of a minor in the registry. Assents will be presented to children 8 years of age or older.
2. The subject or parent/guardian must be competent to consent to the study and to respond to an epidemiology questionnaire.
3. The subject must have a personal history of childhood cancer.
4. The subject must come from a family with a known hereditary cancer syndrome which predisposes family members to an increased risk of cancer development.
Subjects from any family where a known inherited syndrome has been detected, or is suspected, will also be eligible to participate in the registry, so long as two of three study criterion are met. For the purposes of this registry, acceptable syndromes are those suspected of increasing the risk of childhood cancer development. Examples of these syndromes are those listed in Tables 1 and 2 and may also include any other genetic syndromes which may be found to increase childhood cancer development.
We will also query OHSU medical records, to include data on all patients who have had childhood cancer at OHSU. Our OHSU medical record queries would only include childhood cancer cases from OHSU going back 10 years and then continuing into the future, using CPT and ICD-9 codes. Data would be gathered from data queries and then translated onto case report forms 1-3 (see PCBR CRF 1, 2, 3) and then entered into the PCBR database. Only data points listed on the CRFs 1, 2, & 3 will be collected from these patients. No other data points will be included. The variables will be entered into the PCBR database and each patient will be given a unique identifying number and that would be de-identified prior to any analysis. We will use Epic and LCR web to find the variables.
This aspect of the PCBR is a retrospective case series, and necessary personal health information in the database will be limited to patients date of birth. Patients must have had childhood cancer treated at OHSU and be between the ages of 0-79 at the time of diagnosis.
0 - 89
Healthy Volunteers Needed
Duration of Participation
Indefinate. The study has no end date.