Clinical long-term follow-up studies have been a main research interest of the pediatric surgery department of Helsinki University Children's Hospital for decades. Much of the good international academic reputation of our department is based on these studies that have produced a significant number of PhD-theses. (Read more)
Finland and other Scandinavian countries are optimal locations to carry out long-term follow-up studies. The cultural backgrounds are similar, health care systems comparable and societies stable. Moreover, the social security numbers and well-kept national records allow merging of data from different registries and help tracking people's whereabouts.
Our group has been seeking for an opportunity to do multi-institutional collaboration in the field of clinical outcome studies. We are involved in European research networks but these are like huge battle ships: the acceleration phase of activities is very slow and the ability to navigate easily around potential obstacles is very limited. On the other hand, setting up similar research collaboration network in Scandinavia appears to be significantly easier. We have recently started a clinical outcome study network between major Scandinavian pediatric surgical centers; we all have realized that this is the activity we have been missing for ages. At least in these early stages of collaboration there has been a major wave of enthusiasm around participating institutions. In Scandinavia we have a population of 25 million which means that our patient series are comparable if not larger than any international series. One topic has been covered already (outcomes of transanal repair of Hirschsprung's disease) and three more are under way (biliary atresia, long-gap esophageal atresia, total colonic aganglionosis). Importantly, most of the data we can provide is population based which is very uncommon in pediatric surgical outcomes research. The clinical practices within Scandinavia are also very similar which makes patient data management and evaluation of outcomes relatively easy.
The Scandinavian study group aims to produce data that can impact clinical decision making. The data may allow us to standardize clinical practices and provide better care for our patients. Most pediatric surgical index disorders are so rare that any single institution rarely can set up properly powered clinical trials. Our hope is that the Scandinavian collaboration may, at the end of the day, provide opportunities and tools to perform such trials.