What Is the Value of Pediatric Surgical Registries and Surveys?

I am proud to introduce a special issue of the European Journal of Pediatric Surgery that is entirely dedicated to pediatric surgical registries and surveys. Our specialty is unique in many aspects: we look after a wide range of patients that includes fetuses, infants, children, and young adults; we are often faced with conditions that are extremely uncommon, for which we manage patients and perform complex procedures infrequently; and we have a vast literature that ranges from basic science to clinical applications, but yet our practice tends not to be evidence based. For these reasons, in the past years, big efforts have been made to develop registries for rare diseases and surveys to monitor and evaluate practice patterns. In the present issue of the European Journal of Pediatric Surgery , surgeons from different countries give us an update on this hot topic. Petersen and Madadi-Sanjani[ 1 ] tell us about registries for biliary atresia and related hepatobiliary disorders and introduce us to the newly created Web site, www.bard-online.com . This initiative includes decentralized online registries and information for patients and health workers, and offers a valid platform for interdisciplinary communication. Recently, a working group was formed in Europe to establish a network of patients with biliary atresia and related diseases. Skarsgard et al[ 2 ] report us the outcome of the Canadian Pediatric Surgery Network (CAPSNet) and tell us about the lessons learned from this national registry mainly dedicated to congenital diaphragmatic hernia and gastroschisis. Over the course of 10 years, CAPSNet has established standardized, evidence-based practice guidelines that are currently in use across all Canadian perinatal centers, and has provided benchmarked outcomes that are important for quality assurance and improvement. de Blaauw et al[ 3 ] report the structure, the results, and the challenges of the AnoRectal Malformation NETwork (ARM-Net) registry for patients with anorectal malformations. This registry was created by several European pediatric surgical centers that in 2010 joined forces and founded the ARM-Net consortium, with the aim to share knowledge and research collaborations in the field of anorectal malformations. Bagolan et al[ 4 ] describe the development of the CDH study group, its work methodology and the results obtained since its birth in 1995. In the attempt to improve the outcome of congenital diaphragmatic hernia, such a multicenter international registry has helped surgeons, health carers, and scientists from different countries and continents in collecting and analyzing new data about this rare condition. Sfeir et al[ 5 ] report on the French national esophageal atresia registry that has collected data from more than 600 patients. As stated by the authors, this population-based registry is a unique tool that not only unites surgeons in a national network but also assists health authorities and supports family groups. Zani et al[ 6 ] discuss the value of medical surveys, describe the general principles of survey methodology, and report the benefits and limitations of this statistical method. Surveys are an important research tool that nowadays is increasingly used to evaluate the practice patterns of physicians especially in specialties such as Pediatric Surgery, characterized by the lack of sufficient evidence-based literature due to the rarity of the conditions treated. Finally, Skerritt and Hall introduce us to a new form of surgical research collaborative, that of Pediatric Surgical Trainee Research Network. This research collaborative has derived from the experience of adult surgical trainees who started trainee led research projects, including randomized controlled trials, in 2007. The authors describe some of the projects that have been successfully completed in pediatric surgery and the benefits that the trainee networks have for patients and surgeons alike. I am sure that this special issue of the European Journal of Pediatric Surgery will give you new perspectives on several forms of collaborative research. Uniting forces, gathering multicenter experiences, and sharing knowledge and data are essential means to increase our understanding of the diseases, advance management strategies, and finally improve patient outcome.

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