Biobanking in Pediatric Research

Modern pediatric disease research requires rapid access to high quality biospecimens. Morphological studies require precise sample preservation while genetic studies often require thousands of samples to identify biologically or clinically relevant findings. To have the necessary number of samples requires specialized centers called biobanks to collect, process, store and distribute biospecimens and associated clinical data. Records of the biospecimen lifecycle must be maintained to ensure that samples are fit-for-purpose and to avoid spurious results that can cost time and money as well as possibly harming patients. Informatics solutions to sample management can vary from basic sample tracking systems to full laboratory information management systems (LIMS). These tracking systems can be ‘organic’ in-house software systems or commercial software packages. While attention to sample collection is imperative for biobanked samples, sample utility is generally proportional to the quality and quantity of associated clinical data. One benefit of centralized biobanking operations is economies of scale allowing development of interfaces between clinical data from a local electronic medical record (EMR) or research patient data warehouse and de-identified biobank samples. This combination allows previously un-contemplated research projects. Regulatory compliance in pediatric biospecimen collections requires consideration of many issues around informed consent, assent, and reconsent at the age of majority. Finally, issues surrounding return of incidental findings are becoming prevalent in the post-genomics era. The components and benefits of various sample management strategies will be discussed with a focus on ensuring sample quality and integration with clinical data.