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CING participates as full member in four (4) ERNs

FULL MEMBER
 

 

 

The ERN RND (Rare Neurological Diseases) cardinal interests are the Familial ALS and frontotemporal dementia, Familial dementias, Parkinsonian syndromes (MSA, PSP, CBD), Huntington disease, Ataxias and Spastic Paraplegias. For each group of diseases there are working groups.

 

Prof. Kleopas Kleopa participates in the ERN-RND as below:

 

  • Co-Chairs the ERN-RND working group Leukodystrophies as of 2024. (He is a Member since 2023)
  • Participates in the ERN-RND annual Meetings.
  • Presents and discuss with experts unsolved Leukodystrophy cases through the CPMS (Clinical Patient Management System).
  • Prepares and organizes inter-ERN survey on availability of gene therapies across European countries.
  • Organizes series of webinars on gene therapies for neuromuscular and rare neurological disorders.

 

Dr Eleni Papanicolaou participates in the ERN-RND as below:

 

Dr E. Papanicolaou together with Prof. K. Christodoulou (see below) represent Cyprus for the ERN-RND. Dr E. Papanicolaou participates to the Board meetings at the annual conferences. Every six months, Dr E. Papanicolaou updates the records for the ERN about the new cases (numbers of patients) and she is answering many surveys performed by ERNs. Dr E. Papanicolaou, participates in several working groups.

 

Prof. Kyproula Christodoulou participates in the ERN RND as below:

 

The ERN-RND has introduced along with the European Molecular Genetics Quality Network (EMQN) external quality assessment (EQA) schemes for NGS based testing of rare diseases they focus on. The Neurogenetics Department, headed by Prof. K. Christodoulou participates in the pilot and full schemes of both programmes. In addition, the staff of the Neurogenetics Department are informed about the webinars of the ERNs and participate online in several of them. Prof. K. Christodoulou also participates in some group meetings that have relevance with genetic aspects of neuromuscular or rare neurological diseases. 
 

ERN-ITHACA is the European Reference Network for Rare Malformation Syndromes, Intellectual and other Neurodevelopmental Disorders. Specifically, ITHACA stands for Intellectual disability, TeleHealth, Autism and Congenital Anomalies, but it also refers to the Odyssey that the long diagnostic journey represents for patients and families with such rare developmental disorders. This patient-centered network has been established in 2017; today, it is led by Prof. Alain Verloes and consists of 70 full Member Healthcare Providers from 25 Member States. The aim of ERN-ITHACA is to share expertise, experience and resources to offer advanced patient care, research and access to information about rare congenital malformations and intellectual disability disorders of genetic, genomic/chromosomal or environmental origin. The Department of Clinical Genetics and Genomics represents CING as an official full member of ERN-ITHACA, and acts as a referral center providing expert diagnostic services for ITHACA-related disorders. Moreover, the Department of Clinical Genetics and Genomics actively contributes to this Network by disseminating ERN-ITHACA activities, participating and/or initiating collaborative research projects, and overall, raising awareness on ITHACA-related disorders.
ERNs: https://ern-ithaca.eu/about-us/european-reference-networks/ 
 

The ERN-LUNG is a patient-centric network of European healthcare providers and patient organisations, committed Europe-wide and globally to reducing morbidity and mortality from rare lung diseases in people of all ages through patient care, advocacy, education, research and knowledge-sharing. To this end, Primary Ciliary Dyskinesia (PCD) is a rare, genetic, multi-system disorder characterized mainly by a chronic purulent lung disease. The ERN-LUNG PCD Core is a Europe-wide network for centers of clinical management of PCD. The network currently consists of 24 centers in 13 countries. Specifically, the network of the Pediatric Pulmonology Clinic of Archbishop Makarios III Hospital along with the University of Cyprus Medical School and the Department of Cancer Genetics, Therapeutics & Ultrastructural Pathology of the CING serves as the national referral service for adult and paediatric patients suspected for Primary Ciliary Dyskinesia.

The ERN-EuroBloodNet is a collaborative network aiming to improve the healthcare services of complex or Rare Hematological Diseases (RHDs) and conditions that require highly specialized treatment in Europe. ERN-EuroBloodNet covers over 450 RHDs, comprising oncological (for adult patients) and non-oncological (for adult and pediatric patients) diseases.

 

ERN-EuroBloodNet defined five transversal fields of action: (a) cross-border health, (b) telemedicine, (c) best practices, (d) medical education, and (e) clinical trials and research. The latter involves development of the European Blood Disorders Platform (ENROL), a pan-European RHD patient registry, and supports development of ENROL subregistries, such as the Rare Anemia Disorders European Epidemiological Platform (RADeep).

 

CING participates through the Molecular Genetics Thalassaemia Department in collaboration with Nicosia Archbishop Makarios III Hospital in ERN-EuroBloodNet as NAMIII, the only Cypriot ERN-EuroBloodNet partner. CING EuroBloodNet Experts contribute critical activities otherwise not covered for Cyprus, including education and research activities, initiation of virtual cross-border consultations on the ERN Clinical Patient Management System (CPMS), and research and expertise for a wide range of rare blood disorders. Moreover, CING organizes networking activities across multiple EuroBloodNet members as coordinator of the HELIOS COST Action. Most significantly, CING is central to activities of ERN-EuroBloodNet as co-coordinator of ENROL/RADeep and as technical lead for registry development. Moreover, CING is represented in the Steering and Data Access Committees of the ENROL/RADeep team.
 

Related news:
https://www.cing.ac.cy/en/news-113/news394/enrol 
https://www.cing.ac.cy/en/about-us/biomedical-sciences-/mgt/mgt-na/mar20-art05
https://www.cing.ac.cy/en/about-us/clinical-sciences/ncc/newsletter-articles/jun23_art06
https://www.cing.ac.cy/en/about-us/biomedical-sciences-/mgt/mgt-na/jun21_art05
 

 

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