The causes of inflammatory bowel disease (IBD) remain elusive, and as a result, so does a cure. Investigations involving young children with IBD, who are exposed to fewer environmental triggers before disease onset, may yield critical information about disease pathogenesis. Unfortunately, innovative pediatric studies are often limited by small cohorts that are underpowered, especially when advanced technology is used and the focus of IBD research shifts toward systems biology approaches using microbiome, genome, and other “omics” analyses.
Although large collaborative networks and linked biorepositories hold significant value for researchers, the devil is in the details. Universal oversight must ensure consistency in data entry, and databases must be scrutinized frequently to guarantee the accuracy of clinical information such as disease reclassification and changes in disease phenotype without compromising patient confidentiality (1). Furthermore, systematic analyses of biospecimens require symmetry in sample collection, processing, and storage to avoid artifactual variation, particularly when assessing biomarkers (2–4).
We commend the work of Sherman et al (5), who identify key obstacles in creating a large-scale IBD collaborative. These endeavors represent an enormous undertaking that requires the passion of local investigators to maintain the integrity of their participating site. This proposal's objectives are comprehensive and would facilitate the study of factors associated with disease onset, progression, and effective treatment. Adequate support for data collectors and executive leadership could ultimately affect the quality of data. Well-planned and well-maintained disease-specific networks are vital to producing high-impact, transformative research that will undoubtedly lead to improved care for our patients with IBD.
1. National Cancer Institute Best Practices for Biospecimen Resources. http://biospecimens.cancer.gov/practices/2011bp.asp
. Accessed February 8, 2012.
2. Jackson DH, Banks RE. Banking of clinical samples for proteomic biomarker studies: a consideration of logistical issues with a focus on pre-analytical variation. Proteomics Clin Appl
3. Ransohoff DF. Bias as a threat to the validity of cancer molecular-marker research. Nat Rev Cancer
4. McLerran D, Grizzle WE, Feng Z, et al. Analytical validation of serum proteomic profiling for diagnosis of prostate cancer: sources of sample bias. Clin Chem
5. Sherman PM, Brown S, Rose K, et al. Workshop report: developing a pediatric inflammatory bowel diseases network and data platform in Canada. J Pediatr Gastroenterol Nutr