Background:Thalassemia is the most commonly inherited genetic disorders,. Thalassemic patients have to receive regular transfusion to sustain life, as a result of the transfusion accumulate iron overload in the body that require a treatment with iron chelators. Iron overload and iron chelators cause alot of cardiac, hepatic and endocrine complications such as delayed puberty, hypogonadism, osteoporosis, diabetes, hypothyroidism and hypopathyroidism. Although thalassemic patients have seventy percent with disabilities, they desire a and quality of life similar to peers. Status of Turkey:Thalassemia is very serious health problem in Turkey,overall incidence of thalassemia trait is 2.1%, but it is 4.3% in coastal areas, Antalya has a frequency of 10%. A total 5000 thalassemic patients are followed up at 25 Centres Hospitals of Ministry of Health and University in Turkey. In addition, recently, from neighboring countries such as Iraq, Syria and other Middle East Countries, many immigrants have come to our country. In these countries, thalassemia is also big problem like Turkey. We don’t know the number of patients certainly but they will benefit from Project in Turkey.Cardiac, hepatic an endocrine complications were important for quality life in thalassemic patients but they are not followed up enough in Turkey because of there are not standart protocols, quides, infrastructure coordination, communication and regular follow-up. Therefore, there is an urgent need for training doctors and nurses need for regular practice of growth disorders and endocrine complications in thalassemic patients. Aim: The aims of program are to prepare a guide including regular following up patients, to train doctors and to maintain better quality life for thalassemic patients.Partners: As local partners were selected Center for EU Projects of Governorship of Antalya (CEUPA), Antalya Training and Research Hospital, Akdeniz Kan Hastalıkları Derneği (AKD). As European partners: Italy, Germany and BulgariaProject Time: It will be two years Methods: Training of trainers: 20 selected trainers will take one week training on thalasemia, endocrine complications and good practise health care and following the training they will be issued with a certificate in Italy. Education programs: First step: A total 25 doctors and 25 nurses will be participated a meeting in Antalya. Second step: There are a total 5000 patients with thalassemia and about 50% of patients with them have endocrine problems in Turkey. A total of 2500 patients live with endocrine problems they will be benefit as indirectly.Third step: Project will be the dissemination of all documents, guidelines and protocols to all participating Centres and for doctors and nurses of other countries such as European, Africa, Middle East and East Asia. via International Network on Complications Endocrine Adolescent Medicine (ICET-A) under the supervision, coordination and expertice of Prof. Dr. Vincenzo de Sanctis, Coordinator of ICET-A and Consultant at Quisisana Hospital of Ferrara. Action plan for Thalasemic patient’s endocrine complications: Action plan will be applied by Adem Tolunay Thalasemia Center of Antalya Training and Research Hospital.Targets and results: The project is a completely original topic in terms of thalassemics youth desire quality and long life. The skills of doctors and nurses using innovative methods thus thalassemics patients will have better life condition by this project. The target project is training for doctors and nurses. Patients will be the final beneficiary.First time with this project, patient follow-up guide will be prepared for patients and doctors thus, all patients will be followed up and treated in a certain curriculum. The life long and quality of patients will increase with good practice and the training of doctors and nurses. This method will be a new model for other patients in Turkey. The project will improve the quality of life of patients with thalassemia and will extend the life expectancy of patients in overall Turkey.Although project has been written as a joint EU countries, project activities will be spread all over the world with ICET-A group. As well as we will contribute to skills of all doctors and qualifications of thalassemics in the other countries. Project Budget: The budget will be approximately Euro 265,000. As well as all their Project expenses will be paid from the project budget. Project including ERASMUS because Project have Equality, Reality, Acceptibility, Specialty, Measure, Universal and Sensitivity.
Background: Thalassemia is the most commonly inherited genetic disorders,. Thalassemic patients have to receive regular transfusion to sustain life, as a result of thetransfusion accumulate iron overload in the body that require a treatment with iron chelators. Iron overload and iron chelators cause alot of cardiac, hepatic and endocrine complications such as delayed puberty, hypogonadism, osteoporosis, diabetes, hypothyroidism and hypopathyroidism. Although thalassemic patients have seventy percent with disabilities, they desire a and quality of life similar to peers. Thalassemia is very serious health problem and a total 6000 thalassemic patients are followed up at Hospitals of Ministry of Health and University in Turkey. Endocrine complications were important for quality life in thalassemic patients but there are not standart protocols, quides, and regular follow-up. The aims of project were to prepare a guide including regular following up patients, to train doctors and to maintain better quality life for thalassemic patients. The responsibilities of Partners: Project Coordinator: Akdeniz Kan Hastalıkları Vakfı (AKHAV) completed Practical Guide for Effective Colloabration Preparation (PGEC), Web page, Time Table, Road Map, Financial procedures, organization of Education programs.Governorship of Antalya (CEUPA) organised the Opening anc Closing Meetings Brochures, banners, posters. In addition, Monitoring and evaluotion report was maintained by CEUPA. Antalya Training and Research Hospital (ATRH) created Patient tracking, Flow Chart for doctors. Antalya Thalassemia Association created Mobile application program for patients. Private Accredited Quisisana Hospital of Ferrara (FQH) from Italy organized the Vocational Educational Trainers Meeting in Ferrara. Barcelona University, Josep Carrera Institute (BUJCI) from Spain was responsible ICT Based Learning. Project Activities: Four Translational Project Meetings (TPM) have been done by partners in Turkey(2), Italy and Spain. Six local meetings have been done for following up to Project together with local partners in Antalya. Six E- magazines , one E-Book and Seven short videos were published at web page. Three manuscripts were published at the Journal of Endothal in Italy. A manuscript was published at the Journal of Pediatric Endocrinology Reviewer. Training of trainers: A total 20 selected trainers have been trained five days on thalasemia, endocrine complications and good practise health care and following the patient and they issued with a certificate on March 4-8, 2018 in Ferrara-Italy. Educational book: After training in Italy, all trainers have written an educational book. Flow chart and the patient follow-up guide: The trainers have prepared a flow chart and guide. Thalassemia Seminar: Ministry of Health invited one specialist each city from Turkey, thus 100 doctors and nurses 60 different cities has been participated to Thalassemia Seminar on December 10-12, 2018 in Antalya. Trainers who trained in Italy, prepared a Educational book, flow chart and the patient follow-up guide, till to thalassemia seminar. They educated all participants in two days. Mobile application: ATA has prepared a mobile application to doctors and patients for regular following patients . Impacts and long term benefits: In Turkey,there are a total 6000 patients with thalassemia and about 50% of patients with them have endocrine problems in Turkey. In Thalassemia Seminar, we invited all doctors who following up patients in Turkey. They were educated on endocrine complications of thalassemia and received a book, guide and flow chart for following patients. Thus a total of 3000 patients live with endocrine problems they will be benefited as indirectly in long term. In European and World, Project has been disseminated three papers were published in The Journal of Endo-Thal in Italy, one paper was published in the journal of Reviewer of Pediatric Endocrinology. In addition, six E- magazines an one E-Book have been implemented to web page for every body with free of charge. Thus, this Project has been disseminated to doctors in other countries such as European, Middle East and East Asia throught International Network of Clinicians for Endocrinopathies in Thalassemia and Adolescent Medicine (ICET-A) Thus all patients in other countries will be benefited as indirectly in long term.