ABSTRACT
Background: ERN-EuroBloodNet was established in 2017 as the European Reference Network on Rare Hematological Disorders (RHDs) bringing together nationally recognized centres of excellence with the goal of promoting EU best health care in RHDs. ERN-EuroBloodNet has been recently enlarged integrating 103 HCP from 24 EU-MS. Aims: ERN-EuroBloodNet was conceived to contribute to innovative, efficient and sustainable health systems and facilitate access to better and safer healthcare for EU citizens while decreasing the cross-border health barriers. Methods: Since 2017, ERN-EuroBloodNet established the state-of-the art of RHD allowing the implementation of transversal and disease-specific strategies, where actions on very rare RHD were prioritized. Results: Profile. 182 expert profiles were created freely accessible. Expert centers follow 65,000 RHD patients and treat 5,000 new patients per year, while 24 patients requested support for cross-border health assistance. Expertise. The need to improve access to next-generation sequencing for non-oncological RHD and bone marrow transplantation for sickle cell disease (SCD) was identified. Also, significant disparities in the clinical practice of primary vitreoretinal lymphoma were found and we demonstrated that less than 30% of children with SCD benefit from adequate annual stroke risk monitoring. Guidelines. A repository of 68 Clinical Practice Guidelines (CPG) classified on quality of evidence and consensus approach was created. Recommendations for diagnosis and treatment of methemoglobinemia was published in collaboration with EHA. A CPG on Adult Burkitt Lymphoma is under development. Next topics focus long-term complications in hemoglobinopathies and patients' pathways&summary. Education. ERN-EuroBloodNet Webinars were launched for professionals with 26 Thursdays Webinars and 3 EBAH accredited Topic on Focus on Cutaneous Lymphoma, Thrombotic Microangiopathies, and Bone Marrow Failures. A collaboration was established for EHA & ERN-EuroBloodNet Spotlight on Castleman Disease. For patients, 3 Topic on Focus were launched for Myelodysplastic syndromes, SCD, and Cutaneous lymphoma. Past webinars are available at EuroBloodNet EDU Youtube channel. Preceptorships on SCD will be launched soon. Telemedicine. 43 complex cases have been inter-professionally discussed in the Clinical Patient Management System with 21 outcome reports delivered. Registries. 184 Registries were identified through the European Rare Blood Diseases Platform (ENROL), endorsed by the EHA. The ENROL project, which includes rare anemias, dendritic cell leukemia and von Villebrand's disease pilots, aims to collect exhaustive and therefore epidemiological data for RHDs. The final objective is a possibility of EU health planningl and the promotion of research by identifying cohorts of patients. ERNEuroBloodNet launched the collaborative platform on patients with red blood cells and COVID-19 containing so far 373 patients. Collaborations. collaborative research projects were encouraged like EC-funded projects i.e., genomics and personalized medicine in hematological diseases (GenoMed4All) and the properties and viability of erythrocytes (EVIDENCE), or the International Hemoglobinopathy Research Network (INHERENT) for genomic and phenotypic correlations. Summary/Conclusion: The implementation of well-defined strategies but above all adapted to the specific and not yet covered needs of RHD has led to the realization of concrete projects. This has laid the foundations to strengthen health systems in the field of RHD and allow them to flourish under the new EU4Health programme.
ABSTRACT
Background: Patients with cancer are more susceptible to infection because of immunosuppressive treatment given to cure cancer. Several guidelines published at the beginning of the COVID-19 pandemic recommend delaying systemic anticancer treatment until complete resolution of COVID-19 symptoms. In addition, it is important to segregate patients with cancer from patients with COVID-19 to avoid transmission. Nevertheless, some patients will present both diseases, and the duration of eviction from cancer units and delay of cancer treatment after COVID-19 remains unclear. Notably the duration of viral excretion after COVID-19 is a concern in immunosuppressed patients. Methods: We tested all patients with a confirmed initial diagnosis of COVID-19 who needed to receive cancer or immunosuppressive treatment for a solid tumour, haematological or inflammatory disease in our centre from April 1st to May 15th 2020. We have repeated SARS-COV2 RT-PCR until negative viral shedding. Results: We tested 49 consecutive patients: 53% had solid tumours, 37% haematological disease and 10% inflammatory disease. 59% were under 65 years. Overall, 82% of patients had a positive RT-PCR from day 14 to 20 after the initial diagnosis of COVID-19 infection, 60% from day 21 to 27 and 30% from day 28 to 34. Only 4/37 patients evaluated remained with a positive RT-PCR after day 35. No predictive factors were associated with a positive RT-PCR but our results suggest that patients treated for inflammatory disease had a shorter duration of positive RT-PCR. 18 patients had their treatment delayed according to guideline recommendations and 17 patients received their treatment in a dedicated COVID-19 outpatient unit. No symptomatic COVID-19 recurrence was observed during follow-up in patients who had received chemotherapy despite persistent positive RT-PCR. Conclusions: We report here the first assessment of SARS-CoV2 RT-PCR kinetic in cancer patients. A prolonged viral excretion is observed in patients treated for cancer. A systematic retest is needed after day 14 if RT-PCR remains positive. A specific unit dedicated to outpatients with persistent positive RT-PCR allows urgent anticancer treatment and avoids the risk of viral exposure for other immunodepressed patients. Legal entity responsible for the study: The authors. Funding: Has not received any funding. Disclosure: All authors have declared no conflicts of interest.