Last updated 02-04-2020. The current situation with the COVID-19 pandemic is a significant global challenge. We understand that patients with rare inherited congenital digestive (and gastrointestinal) disorders and their families may have concerns about their health at this time. There may be particular concerns surrounding those disorders with pulmonary involvement, such as Esophageal Atresia and Congenital Diaphragmatic Hernia. With the uncertainty surrounding the virus, it is not possible for us at this stage to provide concrete, disease-specific advice to our patient community. However, we encourage patients to follow the guidelines given by the World Health Organisation and your National authorities and stay on the side of caution. We have now been alerted to some COVID-19 patients with rare and/or complex diseases covered by ERNICA. As far as we know, they have mild symptoms and often parents of these children have more clinical symptoms. We will continue to monitor the situation and update this statement with any identified recommendations. We would be grateful to be informed of any further cases. Please let us know by emailing firstname.lastname@example.org (No personal / medical data should be emailed). We also understand that ERNICA members may be required to divert their focus to the COVID-19 effort. It is our intention to continue with ERNICA activities where possible but remain flexible over this very difficult period. As part of the European Commission response to this pandemic, a web conferencing support system for the clinical management of COVID-19 patients (COVID19-CMSS) has been set up to support all EU hospitals treating complex COVID-19 cases. The system provides a fast-tracked route for clinicians to discuss complex COVID-19 cases across borders. The scope of the system is not to address the strategic, organisational, logistical and public health (epidemiological or surveillance) aspects, but to focus exclusively on supporting clinicians in their daily practice. Information about cases will not be recorded or kept on the system. The system has been offered to the competent national authorities represented in the Health Security Committee of the EU and appropriate clinicians are being identified and supported. Follow the links to access the COVID19-CMSS factsheet and privacy statement. Clinical Patient Management System (CPMS) accounts (including ‘guest accounts’ for non-ERNICA centres) can still be used to virtually discuss rare disease and complex cases, with or without a possible connection to the COVID-19 infection. We will support this process. Sending you well wishes at this difficult time. Prof. dr. René Wijnen (ERNICA coordinator)
The STEPS-EA trial is an ERNICA multi-centre randomised controlled trial looking at intralesional steroid injections to prevent refractory strictures in patients with esophageal atresia. The trial involves 1:1 randomization to injection with 10 mg/ml TAC (Kenacort-A 10) prior to balloon dilatation and balloon dilatation without any injection. Click here to access the latest STEPS-EA newsletter (March 2020)
As a result of the COVID-19 pandemic, the 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020) will now take place ONLINE on 14 - 16 May 2020. Click here to find out more and follow the LinkedIn page!