International registry of congenital porto-systemic shunts: a multi-centre, retrospective and prospective registry of neonates, children and adults with congenital porto-systemic shunts.

BACKGROUND: Congenital portosystemic shunts (CPSS) are rare vascular malformations associated with the risk of life-threatening systemic conditions, which remain underdiagnosed and often are identified after considerable diagnostic delay. CPSS are characterized by multiple signs and symptoms, often masquerading as other conditions, progressing over time if the shunt remains patent. Which patients will benefit from shunt closure remains to be clarified, as does the timing and method of closure. In addition, the etiology and pathophysiology of CPSS are both unknowns. This rare disorder needs the strength of numbers to answer these questions, which is the purpose of the international registry of CPSS (IRCPSS). METHOD: A retrospective and prospective registry was designed using secuTrial® by the ISO certified Clinical Research Unit. Given that a significant number of cases entered in the registry are retrospective, participants have the opportunity to use a semi-structured minimal or complete data set to facilitate data entry. In addition, the design allows subjects to be entered into the IRCPSS according to clinically relevant events. Emphasis is on longitudinal follow-up of signs and symptoms, which is paramount to garner clinically relevant information to eventually orient patient management. The IRCPSS includes also three specific forms to capture essential radiological, surgical, and cardiopulmonary data as many times as relevant, which are completed by the specialists themselves. Finally, connecting the clinical data registry with a safe image repository, using state-of-the-art pseudonymization software, was another major focus of development. Data quality and stewardship is ensured by a steering committee. All centers participating in the IRCPSS have signed a memorandum of understanding and obtained their own ethical approval. CONCLUSION: Through state-of-the-art management of data and imaging, we have developed a practical, user-friendly, international registry to study CPSS in neonates, children, and adults. Via this multicenter and international effort, we will be ready to answer meaningful and urgent questions regarding the management of patients with CPSS, a condition often ridden with significant diagnostic delay contributing to a severe clinical course.

A multicentric IT platform for storage and sharing of imaging-based radiation dosimetric data.

PURPOSE: The MEDIRAD project is about the effects of low radiation dose in the context of medical procedures. The goal of the work is to develop an informatics service that will provide the researchers of the MEDIRAD project with a platform to share acquired images, along with the associated dosimetric data pertaining to the radiation resulting from the procedure. METHODS: The authors designed a system architecture to manage image data and dosimetric data in an integrated way. DICOM and non-DICOM data are stored in separated repositories, and the link between the two is provided through a semantic database, i.e., a database whose information schema in aligned with an ontology. RESULTS: The system currently supports CT, PET, SPECT, and NM images as well as dose reports. Currently, two workflows for non-DICOM data generated from dosimetric calculations have been taken into account, one concerning Monte Carlo-based calculation of organ doses in Chest CT, and the other estimation of doses in nontarget organs in 131I targeted radionuclide therapy of the thyroid. CONCLUSION: The system is currently deployed, thus providing access to image and related dosimetric data to all MEDIRAD users. The software was designed in such a way that it can be reused to support similar needs in other projects.

PACS for Bhutan: a cost effective open source architecture for emerging countries.

This paper reports the design and implementation of an innovative and cost-effective imaging management infrastructure suitable for radiology centres in emerging countries. It was implemented in the main referring hospital of Bhutan equipped with a CT, an MRI, digital radiology, and a suite of several ultrasound units. They lacked the necessary informatics infrastructure for image archiving and interpretation and needed a system for distribution of images to clinical wards. The solution developed for this project combines several open source software platforms in a robust and versatile archiving and communication system connected to analysis workstations equipped with a FDA-certified version of the highly popular Open-Source software. The whole system was implemented on standard off-the-shelf hardware. The system was installed in three days, and training of the radiologists as well as the technical and IT staff was provided onsite to ensure full ownership of the system by the local team. Radiologists were rapidly capable of reading and interpreting studies on the diagnostic workstations, which had a significant benefit on their workflow and ability to perform diagnostic tasks more efficiently. Furthermore, images were also made available to several clinical units on standard desktop computers through a web-based viewer. MESSAGES/TEACHING POINTS: • Open source imaging informatics platforms can provide cost-effective alternatives for PACS • Robust and cost-effective open architecture can provide adequate solutions for emerging countries • Imaging informatics is often lacking in hospitals equipped with digital modalities.

Strategies for health data exchange for secondary, cross-institutional clinical research.

Secondary use of health data has a vital role in improving and advancing medical knowledge. While digital health records offer scope for facilitating the flow of data to secondary uses, it remains essential that steps are taken to respect wishes of the patient regarding secondary usage, and to ensure the privacy of the patient during secondary use scenarios. Consent, together with depersonalisation and its related concepts of anonymisation, pseudonymisation, and data minimisation are key methods used to provide this protection. This paper gives an overview of technical, practical, legal, and ethical aspects of secondary data use and discusses their implementation in the multi-institutional @neurIST research project.