During the last Enpr-EMA (European Network of Paediatric Research at the European Medicines Agency) workshop, held in May 2015, adhering networks have been invited to provide a feedback on published guidance documents on the topic of transition from paediatrics to adults clinical care settings within the long-term clinical studies and follow up for chronic diseases.
To this aim, TEDDY (the European Network of Excellence for Paediatric Clinical Research that includes many DEEP members) has forwarded to EnprEMA an extensive recently-published monograph deriving from a large collaborative work developed by the International Network of Clinicians for Endocrinopathies in Thalassemia and Adolescent Medicine (ICET-A). The publication, written by Vincenzo De Sanctis, Ashraf T. Soliman et al., includes both a literature review on general principles of good transition care for patients with chronic diseases and/or disabilities and a specific insight on medical care and transition phase for patients with thalassemia in different countries (Turkey, Iran, Saudi Arabia, Italy, Romania, Greece, Qatar, India, Oman, Egypt and Cyprus). In particular, the article “Medical care and transition phase of thalassemia in different countries: the ICET-A experience” has been prepared with the contribution of Prof. Adriana Ceci, Bonifazi Fedele and Felisi Maria Grazia of the DEEP Consortium and is aimed to discuss the best solution to provide always optimal treatment for all patients with thalassemia.
Considering that the management of thalassaemia patients requires multidisciplinary and collaborative interventions, the article highlights the need to identify the appropriate dimensions of Centres of Expertise (CEs), based both on the number and age of patients, and on their specific clinical, therapeutic and research needs. Legislation is required to endorse and organise the individual units and CEs. The article also underlines that an efficient schedule for medical care and transition phase for patients with thalassemia should be carefully adjusted to the national health system structure and capabilities as well as to the socio-economic status and epidemiology of thalassemia of the individual country.
A copy of the article (not available online) can be friendly provided by request to authors involved in the DEEP project (Prof. Adriana Ceci, Bonifazi Fedele and Felisi Maria Grazia) or writing at firstname.lastname@example.org.