(InterNaTional rEgistry oN Sars-cov-2 posItiVe nEuroendocrine neoplasm patients)
IEO Instituta Europeo di Oncologia
Nicola FAZIO, Principal Investigator, firstname.lastname@example.org
Francesca SPADA, Co-Investigator, email@example.com
Lorenzo GERVASO, Co-Investigator, firstname.lastname@example.org
Darina TAMAYO, Data Manager and Trial Coordinator, email@example.com
Sabrina BOSELLI, Data Manager and Trial Coordinator, firstname.lastname@example.org
Dear Colleagues and Friends,
We are aware that our cancer patients could be more susceptible to be infected from SARS-CoV-2 and develop disease and related complications. Neuroendocrine (NEN) patients are part of cancer patients, but NEN rarity and heterogeneity make difficult to have homogeneous information and clinical management about NEN patients during COVID-19 pandemic. Furthermore data collection about cases of NEN patients SARS-CoV-2 positive are sporadic and related to single countries or institutions. So it will be hard to have reliable data to give homogeneous recommendations for NEN clinical community.
Therefore a global database has been created, named INTENSIVE (InterNaTional rEgistry oN Sars-cov-2 posItiVe nEuroendocrine neoplasm patients), for NEN patients SARS-CoV-2 positive.
The registry will regard as many countries and centers dealing with NEN as possible to have the largest view of this topic.
We are aware that several cases of SARS-CoV-2 positive NEN patients can be reported to other registries or databases, but this does not overlap with the main goal of the INTENSIVE initiative, that is to get the largest and most representative worldwide series of NEN patients SARS-CoV-2 positive. This will be very useful to draw specific indications for clinical practice.
Particularly we could learn which NEN patients really have a higher risk to be infected by SARS-CoV-2 and to develop the related clinical complications and on the other hand how to manage the NEN patients with COVID-19 and particularly the anticancer treatment.
We strongly encourage you to join this survey.
Every participant will be provided with a center ID for which all de-identified patient data can be entered. You will be provided also with a protocol template to obtain local IRB approval. Please note that the local IRB approval is required before any data is actually entered in the system.
We strongly hope you will consider joining us in this global effort. For further information, please read the attached protocol and inclusion/exclusion criteria. You may also reach out to team members individually.
Nicola FAZIO and the INTENSIVE Team