HEMOGLOBINOPATHIES FOR IMMIGRANTS. EDUCATION, PREVENTION , GENETIC DIAGNOSIS AND TREATMENT APPROACH Erasmus Project

Project Title

HEMOGLOBINOPATHIES FOR IMMIGRANTS. EDUCATION, PREVENTION , GENETIC DIAGNOSIS AND TREATMENT APPROACH

Project Key Action

This project related with these key action: Cooperation for innovation and the exchange of good practices

Project Action Type

This project related with this action type : Strategic Partnerships for vocational education and training

Project Call Year

This project’s Call Year is 2019

Project Topics

This project is related with these Project Topics: Access for disadvantaged; Disabilities – special needs; Health and wellbeing

Project Summary

PROJECT TITLE: HEMOGLOBINOPATHIES FOR IMMIGRANTS: EDUCATION, PREVENTION , GENETIC DIAGNOSIS AND TREATMENT APPROACH.
ACRONYM: EQUALITY PLUS
Although hemoglobinopathies are common in tropical and subtropical regions due to natural selection, malaria hypothesis has been an important public health problem in many parts of the world due to migration. The World Health Organization (WHO) resolutions are based on the results of the Hemoglobinopathy Control Programs and the community-based Thalassemia Control Program in the Mediterranean region since 1970s.The hemoglobin disorders are endemic in 60% of the 229 world countries, affecting about 5.2 % of the population and a 7% of pregnant women . Accordingly, every year 332,000 newborn are affected by hemoglobinopathies.
In Turkey, hemoglobinopathies are a very important public health problem as described by law in 1993, and a regulation in 2002. The Ministry of Health (MOH) and the National Hemoglobinopathy Council (NHC) 33 provinces for National Hemoglobinopathy Prevention Program (HPP) and the study was started on 8 May 2003 in Mersin. Accordingly 90% of newborns were prevented by HPP first 10 years. This program was extended to 41 cities in 2013. The number of patients and carriers of haemoglobinopathies has increased, especially in the south and south eastern provinces with the intense arriving of Syrian migrants and the number of newborns with thalassemia has increased to around 1000 and the number of patients that was about 5000 has increased up to 6000.
In 2002, the Thalassemia International Federation (TIF) and the European Network for Rare and Congenital Anaemias (ENERCA), published a policy report on the situation of hemoglobinopathies and migration impact in different European countries pointing out the question “is Europe ready to face this important health care challenge?”
It is noteworthy that in recent years, the profile of patients with hemoglobinopathy in Europe has significantly changed due to steady flow of migrants from Syria, Iraq and other Middle East countries, in addition to the classical migration from African and Asian countries.
This project will provide the best appropriate system for education and training of physicians, not experts in haemoglobinopathies to be able to take over the different .
Based on ENERCA experience, and the longstandig Ferrara experience in diagnosis and treatment of thalassemia, Both partners have participated in the previous successful EQUALITY Project and will take part in this new project by creating a new Consortium with the incorporation of several other experts from Spain and Italy that will serve as experienced models for transnationality (cross border) health care.
According to the frequency of hemoglobinopathy carrier in the Syria is 10 percent and there are 4 milion immigrant in Turkey therefore about 400.000 carriers of immigrants, and expected, 100 newborn patients per year.The estimated total cost per patient is about 7500 € per year. Therefore, if we prevent the born of new patients we will save 750.000 € in the next 3 years.
The aims of project are mainly the screening, prevention and education. The protocols of treatment of hemoglobinopathie followed in Turkey,Spain and Italy will be also taken in consideration.
The objectives of the project are to achieve the targets:
a. To address mainly the issues of thalassemia and sickle cell anemia in migrants living in Turkey,Spain and Italy,
b. To train health managers and family physicians who carry out primary care services in South and South East provinces of Turkey where immigrants are concentrated,
c. To carry out screening of migrants to living in South and South East provinces of Turkey marry and married but not tested migrants and giving genetic counseling for those who have carriers,
e. To prevent the birth of sick children using prenatal diagnosis and preimplantation diagnostic methods,
f. To determine the number of patients and to determine the type of disease by conducting their genetic analysis performed in Turkey,
g. To ensure an adequate health care, we will provide to train specialist physicians who could not attend the Thalasemia Seminar within the framework of the newly completed Equality: Equality project.
Methods to be used for the development of Equality plus project:
To determine startegy education meetings (SEM) for prevention hemaglobinopathies and management of hemoglobinopathies in Turkey, Italy and Spain where EU partners are present.
b. To train health manager and family physicians with practical implementation education meeting (PIEM) by the problem-based training method with technological facilities, thus to determine the carrier frequency of hemoglobinopathies, genetic counselling of carriers, to guide carriers to Prenatal Diagnosis Centers and Preimplantation Genetic Diagnostic Centers to prevent ill child birth and to follow up patients as regularly.

EU Grant (Eur)

Funding of the project from EU: 121197 Eur

Project Coordinator

Akdeniz Kan Hastaliklari Vakfi & Country: TR

Project Partners

• Casa di Cura Quisisana
• T.C. Saglik Bakanligi Halk Sagligi Genel Müdürlugu
• FUNDACIO INSTITUT DE RECERCA CONTRA LA LEUCEMIA JOSEP CARRERAS