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Online e-health Platform on rare anaemias www.enerca.org Co-funded by the Health Programme of the European Union
Online e-health Platform on rare anaemias
www.enerca.org
Co-funded by the Health Programme of the European Union
Visit your doctor…
The doctor does some
tests…
…and says: you have
anaemia!
The doctor prescribes
iron pills…
With the right diagnosis,
you feel
better!
You feel ill…
Rare anaemia a medical challenge
Rare Anaemias vicious circle
Phase I (2002 – 2004)
Network of experts
Clear and concise contents
Protocol for diagnosis
Co-funded by the Health Programme of the European Union
Enerca, creating an ERN since 2002
Phase II (2005 – 2008)
Network Consolidation
Haemoglobinopathies database
Dissemination
Phase III (2009 – 2013)
Social awareness
White book
Guidelines
2013-2016
2013-2016
ASSOCIATED PARTNERS ACRONYM CONTACT PERSON COUNTRY
Institut d’Investigacions Biomèdiques August Pi i Sunyer IDIBAPS Joan Lluis Vives-Corrons Spain
Maria del Mar Mañú
Centre Hospitalier Universitaire de Montpellier CHUM Patricia Aguilar Martinez France
Hôpital Erasme - Université Libre de Bruxelles ERASME Béatrice Gulbis Belgium
Cyprus Foundation for Muscular Dystrophy Research CING Marina Kleanthous Cyprus
European School of Haematology ESH Didi Jasmin France
Foundation IRCCS Cà Granda Ospedale Maggiore
Policlinico Milan IRCCS Paola Bianchi Italy
King's College London School of Medicine KCL Swee Lay Thein
United
Kingdom
Thalassaemia International Federation TIF Androulla Eleftheriou Cyprus
Michael Angastiniotis
Universidad del País Vasco / Euskal Herriko Uniberstitatea UPV/EHU Carlos Romeo Spain
Pilar Nicolás
University Medical Center Utrecht UMCU Richard van Wijk Netherlands
University of Cyprus UCY Christos N. Schizas Cyprus
West Hertfordshire Hospitals NHS Trust UK NEQAS Barbara de la Salle
United
Kingdom
2013-2016
COLLABORATING PARTNERS ACRONYM CONTACT PERSON COUNTRY
University of Athens, Biomedical
Research Foundation BFR Dimitris Loukopoulos Greece
Cyprus Thalassaemia Centre CTC Soteroula Christou Cyprus
Centro di Ricerca per l'Ingegneria
Genetica CEINGE Achille Iolascon Italy
Centro Hospitalar Coimbra CHC Leticia Ribeiro Portugal
Universitá Degli Estudi de Milano UNIMILANO Andrea Mosca Italy
University of Ulm UULM Hermann Heimpel Germany
Universitá Vita-Salute San
Raffaele UNISR Clara Camaschella Italy
Centre Hospitalier Universitaire
de Toulouse e- HEMATimage CHU Joel Corberand France
Hôpital Robert Debré HDR Lydie da Costa France
Aristotelian University of
Thessaloniki AUTH Panayiotis D. Bamidis Greece
Institute of Predictive and
Personalized Medicine of Cancer IMPPC Mayka Sanchez Spain
University of Milan UM Domenica Cappellini Italy
National Centre of
Haematological Transfusiology
Sofia NCHT Mirela Rangelova Bulgaria
Centro Nazionale Malattie Rare
and Europlan Project CNMR Domenica Taruscio Italy
Poor implementation of comprehensive data collection and analysis systems
Clinical care, prevention and diagnosis practices vary widely across countries
Inequalities on access to diagnosis and therapies
e-Registry
This is not an easy job!
e-Learning
Telemedicine
Some rare anaemias are not so rare: Haemoglobinopathies
http://www.sxc.hu/photo/1380779
The challenge of epidemiology in rare anaemias
• Haemoglobinopathies are today the most common genetic disorder in Europe.
• Over 330,000 affected children with major haemoglobinopathies are born worldwide each year.
• 1% of couples are at risk of having a newborn with a severe syndrome.
• There are poor data on their precise prevalence, overall burden and trends.
e-ENERCA action
e-Registry Androulla Eleftheriou (TIF)
• Inventory of expert centres and epidemiological figures
• Registry and electronic health record
• Epidemiological data • Relevant clinical information
http://www.sxc.hu/photo/1139316
Global management of the patient varies among countries
http://www.sxc.hu/photo/1139316
The challenge of knowledge in rare anaemias
e-ENERCA action
e-Learning Patricia Aguilar (CHUM)
• Harmonization of medical Curricula
• Continuous medical education • On-line modules focused on
specific topics • Modules complementing on-
site training • Courses and Workshops
http://www.sxc.hu/photo/987822
• About 30% of rare anaemias are undiagnosed or misdiagnosed.
• Proper treatment / genetic counselling / prognosis is impossible
• Patient and patient’s family anxiety
The challenge of diagnosis in rare anaemias
http://www.sxc.hu/photo/1078182
e-ENERCA action
Telemedicine Béatrice Gulbis (ERASME)
• Reduce inequalities among countries
• Better and faster diagnosis • On-line discussion groups of
experts • Reducing the cost of healthcare • Repository of cases and images
for education
http://www.sxc.hu/photo/1155570
e-ENERCA (IT tools)
www.enerca.org
e-learning e-learning e-learning Registry (Cyprus)
e-Learning (France)
Telemedicine (Belgium)
Consortium & ENERCA Members
Target groups: Health professionals, Health Authorities …. Patients
Multi channel (Computer, Smartphone, Tablet…)
The ENERCA website
www.enerca.org
• Easy and direct access to new e-Health IT
• Patients and Health Professionals Networking
• Reliable information about rare anaemias
• Training & Educational Material
• News and Agenda
A network for many RD associated with anemia
Diseases cards
And more…
Free Webcasting trainings courses
And more…
Educational Material
And more…
Apps
• ERN long term sustainability. • National recognition of centers of expertise • European Commission recognition of ERN • National and European economical support
The challenge of sustainability
http://www.sxc.hu/photo/1437890
e-ENERCA action
Sustainability Carlos Romeo (UPV/EHU)
• Promote the recognition of the European Reference Network (ERN) on RA and Centres of expertise
• Analyse the impact of the entry into force of the Directive 2011/24/EU on the application of patients’ rights in cross-border healthcare.
http://www.sxc.hu/photo/469047
e-ENERCA action
• Identification of key players in each country: • Responsible person of a medical center • National Authority involved in the national
plans for RD • Professional involved in RA diagnosis and
management. • Presentation of the ENERCA recommendations for
recognition of centres of expertise: a WhiteBook
http://www.sxc.hu/photo/469047
ENERCA offers a solid platform to develop multidisciplinary initiatives for tackling rare anaemias...
ALL the days of the year!
Fight against rare anaemias
www.enerca.org Co-funded by the Health Programme of the European Union
Thank You!!!
ENERCA Coordinator Group
Head of Project – Joan Lluis Vives Corrons ([email protected]) Project Manager - María del Mar Mañú ([email protected]) Project Assistant - Laura Olaya Costa ([email protected])
Unitat d’Eritropatologia IDIBAPS Hospital Clínic, University of Barcelona c/ Villarroel 170 - 080036-Barcelona Phone: +34 934515950
