Online Pediatric Cancer Aggregation Resource (OPCARe)

Sloan-Kettering Inst Can Research, New York NY

Investigators

Linked publications, trials & patents

Abstract

PROJECT SUMMARY The Online Pediatric Cancer Aggregation Resource (OPCARe) registry will employ a web-based health solution to reach pediatric cancer patients, families, and survivors who might not otherwise have access to cancer registry sites. Individuals will learn of the registry from a variety of sources including collaborating providers (pediatric oncologists, genetics clinics, long-term survivor clinics), commercial genetic testing laboratories, and pediatric cancer support groups and associations as well as online outreach and snowball recruitment. We aim to: 1) Develop and pilot a secured web-based platform with patient- and provider-interfaces, to aggregate data on childhood cancer patients including those undergoing MSK-IMPACT targeted tumor- and matched normal-sequencing testing as well as survivors with suspected or know cancer predisposition syndromes; 2) Aggregate data on demographics, treatment exposure, genotypes and phenotypes, chronic health conditions, clinical late effects, family history, lifestyle factors, and financial toxicity on participats through the platform described in Aim 1; and 3) Complete an assessment of the quality of data prior to packaging and transferring it to the National Childhood Cancer Registry (NCCR). The study?s landing page will provide relevant educational materials on the registry, cancer genetics, survivorship, and relevant cancer associations, thus improving patient education opportunities. It will also include a provider interface to improve collection of patient health data. The secure platform will include a digital informed consent for patient participation and with appropriate permissions will aggregate information from patients and providers by way of research questionnaires and documents obtained through medical record releases, and from support groups or associations who collect member data. Follow-up assessments can also be sent to participants at a later date. Participants can optionally opt-in for future contact about biospecimen collection and/or psychometric survey participation. Accruals and completeness of data will be monitored, and data from various sources will be compared for accuracy as part of quality control checks. Data transfer between OPCARe and NCCR will occur regularly. OPCARe will be a means to capture lacking treatment, genetic, and outcome data which are needed to advance our understanding of pediatric cancer and the natural history of these rare tumors. It will allow patients who might not otherwise have access to cancer registries to participate in an accessible online registry, taking advantage of the increasing penetration of internet access across the country. Patients and those involved in their clinical care (e.g. oncologists, genetics and survivorship clinics, testing labs) will be sources of comprehensive data.