THALIA: una breve descrizione
La talassemia, una malattia genetica infantile un tempo letale, può oggi essere efficacemente prevenuta e adeguatamente trattata, grazie ai progressi medici e scientifici degli ultimi tre decenni. Tuttavia, la priorità data alla talassemia nelle agende sanitarie nazionali e lo sviluppo di piani nazionali per il suo controllo efficace nell’UE è stata compromessa da ostacoli molto complessi , principalmente legati alla sua raritàed il fattore migratorio..
Il progetto THALassaemia In Action (THALIA) si concentra sull’Europa, rivolgendosi a pazienti affetti da talassemia ed altre emoglobinopatie, operatori sanitari e responsabili politici. Il progetto THALIA si concentra in particolare su:
1) i paesi che accolgono la maggior parte dei rifugiati e dei migranti provenienti da paesi con elevata prevalenza di talassemia, ovvero Francia, Germania e Svezia
2) i principali paesi di transito per i migranti, vale a dire Serbia e Austria.
Nella mappa qui di seguito, si possono vedere i paesi su cui si concentra la TIF, tramite il progetto THALIA. Questi paesi sono contrassegnati in rosso.
THALIA: scopi e obiettivi
Basandosi sui principali pilastri dell’attività della TIF, il progetto THALIA mira a raggiungere quattro obiettivi generali:
- Continuare e rafforzare la formazione di pazienti/genitori ed operatori sanitari, nonché le capacità, le competenze ed il network dei pazientia livello nazionale e tra i diversi stati europei. . Ciò viene raggiunto attraverso lo sviluppo di strumenti di e-learning e l’avvio di corsi formativi per la costruzione delle competenze e seminari di formazione.
- Aumentare la consapevolezza tra la popolazione generale sulla talassemia e sull’importanza di un’assistenza ottimale, nonché tra i gruppi target del progetto THALIA a livello nazionale ed europeo. Si arriverà a ciò impiegando una serie di strumenti, attività e pubblicazioni online.
- Dare priorità alle malattie dell’emoglobina e al loro controllo (prevenzione e gestione) a livello europeo. Si arriverà a ciò istituendo e formando associazioni nazionali di pazienti nei paesi dell’UE ritenuti prioritari, creando una Cartella clinica elettronicaeuropea e avviando un dialogo con i responsabili delle politiche a livello nazionale ed europeo.
- Sostenere programmi di ricerca e studi focalizzati sulla gestione clinica della talassemia. Si arriverà a ciò tramite la pubblicazione di linee guida sulla gestione clinica della talassemia, la partecipazione a convegni scientifici e l’offerta di borse di studio a medici specialisti nei paesi europei ritenuti prioritari.
THALIA: Division of Labour
The THALIA project is divided into seven Work Packages, which are described in the tabs below:
WP1: Work Programme Management
Work Package (WP) 1 aims to render the project deliverables, on time, at a high level of quality, within budgetary limits and in communication with EC, covering all management aspects of THALIA2018 (operational, financial, risk), as well as reporting. The deliverables under this WP are an Interim Report and a Periodic/Annual Report that will include the Operational Plan of THALIA2018, a quick reference manual for TIF staff members on their annual work.
WP2: Education (Pillar I)
Work Package (WP) 2 aims to continue and strengthen the education of patients/parents and healthcare professionals, as well as the patients’ capacity, competency and networking within and across countries and regions of Europe. A number of activities are foreseen under three categories:
- a) Online education tools for patients and healthcare professionals across Europe (Educational Platform for Healthcare Professionals; Educational Platform for Patients; TIF Digital Library);
- b) Capacity building courses for patients, healthcare professionals and volunteers from France (Capacity Building Course for newly established association and patients; Capacity Building Course for healthcare professionals; Traineeship for ESC volunteers) and
- c) Fellowships for EU physicians (Renzo Galanello Fellowship Programme).
WP3: Awareness Raising (Pillar II)
Work Package (WP) 3 aims to raise awareness on Thalassaemia and the importance of optimal care among the public at large, as well as among THALIA target groups, namely carriers and patients with Thalassaemia, healthcare professionals in the fields of Haematology and Paediatrics and policymakers at national and European level and promote relevant activities amongst national associations. To this end, TIF website will be translated into French, German, Greek, Italian and Arabic by the end of 2018 and will be enriched with content from the annual Thalassaemia Video Challenge. Thalassaemia Patients Connect Platform and THALIA Mobile App will be used to reach EU-based patients, while a Pocket Guide for Healthcare Professionals will be drafted and disseminated.
WP4: Policy Advocacy (Pillar III)
Work Package (WP) 4 aims to prioritise haemoglobin disorders and their control (prevention and management) at international/United Nations (UN) and European Union (EU) levels. TIF will work in a simultaneous top-down and bottom-up approach, raising awareness among international and European institutions (Micro-campaign on Syria crisis and thalassaemia spread), creating quality tools for national health systems (Thalassaemia EU Electronic Health Record/ Architecture) and empowering patients through the establishment of associations wherever there are patients (New Thalassaemia national associations) and via the exchange of good practices between associations (TIF EU Twinning Programme).
WP5: Research (Pillar IV)
Work Package (WP) 5 aims to support research programmes and studies focused on treatment improvements and the final cure. Through WP5, TIF will inform patients about clinical trials using its educational tools and will invest on the creation of an EU-wide Electronic Health Record. Moreover, TIF Guidelines for the clinical management of thalassaemia will be given further visibility via their publication in peer-reviewed academic journals and TIF experts will participate in scientific conferences to raise awareness among the research community about thalassaemia and haemoglobinopathies.
WP6: Dissemination of Results
Work Package (WP) 6 aims to provide the maximum visibility and public awareness of THALIA’s key vision and planned activities by developing and following a sound dissemination and communication strategy. All key stakeholders and target groups (patients, healthcare professionals, policymakers) will be actively involved from the start of the project, in order to create awareness for TIF’s Work Programme, receive feedback from them and maximise the impact of THALIA activities and results. A number of activities is foreseen to be implemented via a) online media (website, social media pages, newsletters, email blasts), b) traditional media (articles, TV appearances) and c) events (press conferences).
WP7: THALIA2018 Evaluation
Work Package (WP) 7 aims to establish and coordinate internal and external evaluation mechanisms which will assess the running of the work programme, the quality of deliverables and the achievement of objectives and impact. THALIA2018 will be evaluated internally by the Board of Directors and the Executive Director who will draft an Internal Evaluation Report. The external evaluation of the work will be assigned to a third independent party that will deliver a comprehensive report.
The major component of TIF’s internationally accredited Educational Programme is the organisation of educational events, such as conferences, seminars and workshops, held at local, national, regional and international levels.
Aiming at the continuous training of patients on issues relevant to the management of thalassaemia and other haemoglobinopathies, as well as the improvement of existing conditions and services provided for the support and care of patients with these chronic conditions in Europe, TIF organises yearly in the context of the THALIA project educational activities two major workshops for patients/patient organisations and healthcare professionals.
THALIA: Mobile App
Committed to continuing efforts to develop useful tools for individuals with thalassaemia and haemoglobin disorders worldwide, TIF introduces a novel mobile health application for patients with thalassaemia and sickle cell disease, the THALIA Mobile App.
This application is primarily designed to constitute a useful digital tool in helping individuals self-manage their disease more effectively on a daily basis.
TIF was invited by CHAFEA in August 2019 to submit a poster describing its work and achievements in the framework of THALIA. The poster was approved by the CHAFEA team and was electronically exhibited at the High-Level Conference drawing the attention of all participants.
The THALIA poster is divided into 3 parts, providing details on the epidemiology and pathophysiology of the thalassaemia and sickle cell syndromes and how these are linked to migration. Special emphasis is given on the methodology and activities of the THALIA project that started in 2018 and will end in 2022. These are a reflection of TIF’s core activities, adjusted to the needs of thalassaemia-related stakeholders residing in or arriving to EU countries.
Every year TIF’s Executive Director highlights in a dedicated article a significant issue related to migration and the increasing prevalence of thalassaemia and haemoglobin disorders in Europe.
Is Europe ready (for haemoglobinopathies on the move)?