Development of the SIOPE DIPG network, registry and imaging repository: a collaborative effort to optimize research into a rare and lethal disease.

Diffuse intrinsic pontine glioma (DIPG) is a rare and deadly childhood malignancy. After 40 years of mostly single-center, often non-randomized trials with variable patient inclusions, there has been no improvement in survival. It is therefore time for international collaboration in DIPG research, to provide new hope for children, parents and medical professionals fighting DIPG. In a first step towards collaboration, in 2011, a network of biologists and clinicians working in the field of DIPG was established within the European Society for Paediatric Oncology (SIOPE) Brain Tumour Group: the SIOPE DIPG Network. By bringing together biomedical professionals and parents as patient representatives, several collaborative DIPG-related projects have been realized. With help from experts in the fields of information technology, and legal advisors, an international, web-based comprehensive database was developed, The SIOPE DIPG Registry and Imaging Repository, to centrally collect data of DIPG patients. As for April 2016, clinical data as well as MR-scans of 694 patients have been entered into the SIOPE DIPG Registry/Imaging Repository. The median progression free survival is 6.0 months (95% Confidence Interval (CI) 5.6-6.4 months) and the median overall survival is 11.0 months (95% CI 10.5-11.5 months). At two and five years post-diagnosis, 10 and 2% of patients are alive, respectively. The establishment of the SIOPE DIPG Network and SIOPE DIPG Registry means a paradigm shift towards collaborative research into DIPG. This is seen as an essential first step towards understanding the disease, improving care and (ultimately) cure for children with DIPG.

Usability evaluation of a computerized physician order entry for medication ordering.

Despite CPOE (Computerized Physician Order Entry) systems' potential to enhance patient safety by reducing medication errors, recent studies have cast some doubts on their role in error reduction. CPOE systems with poorly designed interfaces have proven to cause users dissatisfaction and to introduce new kind of errors in the ordering process, suggesting a threat instead of an enhancement of patient safety. The main objective of this study is to identify usability problems related to a CPOE medication system's design and determining their severities. Two experts completed a cognitive walkthrough (CW) of an ordering task based on a clinical scenario for ordering the consolidation phase of chemotherapy for a leukemic patient. Fifty five usability problems were found and classified into eleven categories. CW identified cosmetic to catastrophic problems leading to inefficient use of the CPOE system and potentially resulting in users' confusion, longer ordering duration, and medication errors. The complexity of the CPOE design, its rigidness and lack of user guidance suggests the necessity to redesign the current user interface in order to match clinicians' ordering behaviors and to fully support them in the medication ordering process.