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Comment On: Use of Patient Registries and Administrative Datasets for the Study of Pediatric Cancer

To the Editor: The review recently published by Rice et al.[1] focusing on the research potential of patient registries and administrative datasets represents an important addition to the pediatric oncology literature. As the authors point out, although clinical trials have driven most of the improvement in childhood cancer outcomes, they are unable to answer many important clinical and health services questions. Research using secondary data, by contrast, has been used to study late effects, health services utilization, and variations in care, all topics because of long lag times, rarity, or the need for population-based data would be difficult to study using traditional clinical trial design.[2–4] While commendably calling attention to this under-utilized methodology, Rice et al. nonetheless make two important omissions of which readers should be aware. First, the authors advocate for the development of guidelines for the conduct of secondary data analyses, modeled on the CONSORT statement. In fact, a multinational effort with this objective is already underway. The REporting of studies Conducted using Observational Routinely-collected Data (RECORD) statement expands the existing STROBE guidelines to the research conducted with administrative health data.[5] The RECORD statement is already available online (http://record-statement.org). Guidelines for validation studies of health administrative data have also been published.[6] Second, the authors make no mention of the significant research using secondary data that has been conducted outside the United States. Healthcare data from jurisdictions with singlepayer health insurance systems allow for truly population-based and longitudinal research. Examples relevant to pediatric oncology include studies of prediagnostic healthcare use; outcomes among vulnerable populations; and long-term mental health needs across Canada, Australia, and Europe.[2,7–9] In addition, many of these jurisdictions have successfully linked different population-based datasets using unique patient identifiers while maintaining appropriate privacy and confidentiality safeguards. This has allowed for elegant analyses, for example, looking at the health of the offspring of childhood cancer survivors in Scandinavia, rates of antidepressant use among the survivors by linking to prescription drug databases in Canada, and healthcare use at the end-of-life in Taiwan.[3,4,10] The potential of secondary health data to improve the care of children with cancer is clear. Maximizing that potential will however require collaboration not only between researchers within countries, but across countries as well.