The VASCERN European Reference Network: An overview.

Established since 2017 and co-funded by the European commission, VASCERN is the European Reference Network aiming at improving and homogenizing care of patients with rare multisystemic vascular diseases throughout Europe. It gathers 31 expert teams from 26 highly specialized multidisciplinary HCPs, plus 7 Affiliated Partner centers, from 16 EU Member States, as well as more than 65 patient organisations (ePAG). It is structured around 5 main RDWGs, each specialized in a specific disease or group of diseases. It produces resources for doctors or patients in English, which are translated and used across Europe and the world. These resources include educational videos, guidelines, clinical outcome measures and expert consensus statements. Communication through VASCERN's social media channels and website ensure these valuable documents and media are shared across the EU and beyond. VASCERN's activities are enabled by the use of eHealth tools like the CPMS (Clinical Patient Management System), to discuss complex cases, and WebEx, for videoconferences. VASCERN also develops its own registry of rare vascular diseases, as well as a Mobile Application referencing all the expert centers and patient organisations in Europe to facilitate patient access to optimal care. Finally, VASCERN is coordinated at the Hopital Bichat-Claude Bernard in Paris by a team of 5, responsible for the organizational, technical, communication, administrative and budgetary tasks of the project. This review focuses on the notable achievements made in the first four years of the network and the challenges it still faces.

eHealth for patients with rare diseases: the eHealth Working Group of the European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN).

BACKGROUND: The European Reference Network on Rare Multisystemic Vascular Diseases (VASCERN) was launched in 2017 and involves, to date, 35 highly specialised multidisciplinary expert centres (from the 30 full Healthcare Provider members) coming from 11 countries and more than 70 patient organizations from 16 countries. The eHealth Working Group (WG) of VASCERN was set up to develop practical, patient-centred solutions and strategies for effective use of eHealth tools to answer the needs of patients with multisystemic vascular rare diseases. THE EHEALTH WG: Following the identified patients' needs and following the guiding principles of collaboration and patient-centredness, the eHealth WG was created with the following aims: to develop a mobile app to help patients find expert centres and patient organizations, and to develop resources (Pills of Knowledge, PoK) for training and education via digital platforms (eLearning). The mobile app includes, to date, functionalities that allow users to find expert centres and patient organizations across Europe in the area of rare multisystemic vascular diseases. Discussed app developments include personalized digital patient passports, educational material, emergency management guidelines and remote consultations. Regarding training and education, a variety of PoK have been developed. The PoK cover several topics, target several user groups, and are delivered in various formats so that they are easy-to-use, easy-to-understand, informative, and viable for delivery and sharing through digital platforms (eLearning) including, e.g., the VASCERN YouTube™ channel. CONCLUSION: Overall, the work carried out by the eHealth WG of VASCERN can be seen as a pilot experience that may serve as a basis to for collaborative development of patient-centred eHealth tools that answer the needs of patients with various rare diseases, not limited to rare multisystemic vascular diseases. By expanding the multidisciplinary approach here described, clinical and research networks can take advantage of eHealth services and use them as strategic assets in achieving the ultimate goal of ensuring equity of access to prevention programs, timely and accurate diagnosis and specialized care for patients with rare diseases throughout Europe.

Laparoscopic feeding jejunostomy technique as part of staging laparoscopy.

Placement of a feeding jejunostomy tube is indicated for patients who need enteral access but where a gastrostomy is not feasible. This paper presents the technique and results of laparoscopic placement of feeding jejunostomy tubes in patients presenting with esophagogastric cancer. From December 2002 to February 2004, patients diagnosed with esophagogastric cancer with a potentially resectable lesion underwent staging laparoscopy. Laparoscopic feeding jejunostomy was performed on patients who were potential candidates for chemotherapy with palliative intent or neoadjuvant treatment prior to resection surgery. Surgical technique, recovery of bowel function, commencement of feeding jejunostomy, total time tube was in situ, and perioperative complications were analyzed. Of the 22 patients who underwent staging laparoscopy, a feeding jejunostomy tube was placed in 18. The remaining 4 patients were deemed to have advanced disease precluding any therapeutic options and underwent placement of esophageal stents. Feeding tubes remained in situ for a median time period of 76 days. Fourteen patients required enteral support and tubes were used for a median of 30 days. Complications from tube placement included 2 cases of wound infections, 1 of minor leak and 1 tube dislodgment. Patients were followed up for a median time of 112 days. Findings from current series suggest that placement of a feeding jejunostomy tube at the time of staging laparoscopy is a safe and reliable means of providing and maintaining nutrition for patients presenting with esophagogastric cancers.