Team

Diana Marinello is the network manager of ERN ReCONNET since june 2017.

She is in charge of strategic and operational management of activities and stakeholders; supervision of the policies and procedures development and management; support to the Scientific Coordinator in the research activities of the Network and in the preparation and management of research studies and manuscripts of the ERN; coordination of the patients’ involvement; coordination of the implementation of the narrative medicine approach; collaboration with other ERNs and other initiatives on rare diseases; management of the educational activities of the ERN; coordination of the National Hubs; member of the ERN ReCONNET Operational Helpdesk; support in the management of the virtual clinical panels; participation to the ERN Coordinators WGs and co-chairing of the ERN Project Managers WG; support to the Coordination of the ERN Transversal WG on Pregnancy and Family Planning; support to the ERN Continuous Monitoring and ERN ReCONNET Quality Improvement System, Programme and Project Management; management of the European Registry Infrastructure for data harmonization in rare and complex connective tissue and musculoskeletal diseases (TogethERN ReCONNET); coordination of the Working Group and of the activities related to the Mapping of existing rCTDs registries; in charge of the ERN proposals and support in grant management, preparation of deliverables; submission of abstracts and poster to scientific conferences.

Education and training

02/2021 – CURRENT
Master in Methodologies supporting patient engagement and communication (UniCusano)

09/2021
Orphanet nomenclature and Orphanet Rare Disease Ontology (Orphanet)

04/2021
Traning on ICH Good Clinical Pratice Guidelines (AVANTYO Institute of Clinical Research)

12/2020
EURORDIS Leadership School on Healthcare & Research (EURORDIS)

09/2020
International Summer School on Rare Disease Registries and FAIRification of Data (EJP RD)

08/2020
Project Management advanced course (Stargate Consulting)

06/2019
Licence for the Morisky Widget MMAS-8 medication adherence and medication reconciliation (Morisky)

06/2018
EURORDIS Summer School on medicines research and development (EURORDIS)

03/2018
Project Management Certificate (ISI PM)

04/2008
University Degree in Foreign languages (Roma Tre University)

Publications

• Empowering Patients in the Therapeutic Decision- Making Process: A Glance Into Behçet’s Syndrome
• Being a caregiver of a Behçet’s syndrome patient: challenges and perspectives during a complex journey
• The impact of COVID-19 on rare and complex connective tissue diseases: the experience of ERN ReCONNET
• Adherence to treatment in Behçet’s syndrome: a multi- faceted issue
• A systematic literature review of existing tools used to assess medication adherence in connective tissue diseases: the state of the art for the future development of co-designed measurement tools
• Patient engagement in healthcare: a preliminary set of measures to evaluate patient engagement in the European Reference Networks
• RarERN Path: a methodology towards the optimisation of patients’ care pathways in rare and complex diseases developed within the European Reference Networks
• Shaping the Future of Rare Diseases after a Global Health Emergency: Organisational Points to Consider
• Clinical practice guidelines adherence, knowledge and awareness in rare and complex connective tissue diseases across Europe: results from the first ERN ReCONNET survey