Prevention of Thalassaemia Major in Latium (Italy)

Bianco, I; B, Graziani; Lerone, Margherita; P, Congedo; Aliquò, M C; Ponzini, Donatella; Braconi, F; Foglietta, Enrica; Modiano, G.

doi:10.1016/s0140-6736(85)90152-7

Cited by 13 publications

(3 citation statements)

References 5 publications

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“…On occasions, reports were used from industry and national/regional health authorities and from relevant scientific conferences. In this database most African and American continents data are incomplete and were thus supplemented from the modell's almanac [8]. …”

Section: Methodsmentioning

confidence: 99%

The Impact of Migrations on the Health Services for Rare Diseases in Europe: The Example of Haemoglobin Disorders

Angastiniotis¹,

Corrons

Soteriades

et al. 2013

The Scientific World Journal

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Migration from different parts of the world to several European countries leads to the introduction of haemoglobinopathy genes into the population, which creates several demanding needs for prevention and treatment services for Hb disorders. In this paper we examined the degree to which European health services have responded to such challenges and in particular to health services necessary to address the needs of patients with thalassaemia and sickle cell disease (SCD). Information on available services was obtained from international organizations, collaborated European project, and the Thalassaemia International Federation (TIF) Databases, which include information from published surveys, registries, field trips, and delegation visits to countries and regions by expert advisors, local associations, and other collaborators' reports. Results show that countries with traditional strong prevention and treatment programs are well prepared to face the above challenges, while others are urgently needed to address these problems in a systematic way. The Thalassaemia International Federation (TIF) is committed to monitor the progress, raise awareness, and support the promotion of more immigrant-oriented health policies to ensure their integration in society and their access to appropriate, adequate, and timely health services.

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Section: Methodsmentioning

confidence: 99%

The Impact of Migrations on the Health Services for Rare Diseases in Europe: The Example of Haemoglobin Disorders

Angastiniotis¹,

Corrons

Soteriades

et al. 2013

The Scientific World Journal

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“…3 Thalassaemia can be prevented in whole populations by a programme of community education, population screening, genetic counselling, and the oVer of prenatal diagnosis. 7 Advances in preventive approaches to this disease over the past two decades have dramatically reduced the rate of new cases of thalassaemia in Sardinia, [8][9][10][11][12] Cyprus, 1 12 13 Greece, 14 The United Kingdom, [15][16][17][18] Canada, 17 19 20 and Italy. 21 The WHO recognises the public health importance of thalassaemia, recommending the adoption of demonstrably successful preventive approaches in other member states.…”

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confidence: 99%

Cost-benefit analysis of a national thalassaemia prevention programme in Israel

et al. 1998

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Objective-In Israel (population 5.7 million) there are around 200 known living subjects with thalassaemia major, of whom around 80% are from the northern district. This study aims at examining the costs and benefits of a national screening programme to prevent thalassaemia in Israel. Measurements and main results-The lifetime healthcare costs of caring for a person born with thalassaemia major are $284 154. The costs of the home infusion service (33.1%) actually exceed the costs of the chelating agent itself (22.1%). The remaining 44.8% of costs are due to stay in hospital, operations, outpatient visits, laboratory tests, therapists, etc. Lost earnings and premature mortality costs account for a further $51 843 and $141 944 respectively for each case. A national screening programme would cost $900 197 and prevent around 13.4 homozygotes being born, at a cost of $67 369 for each birth prevented. The benefit-cost ratio of the programme to the health services is 4.22:1, which increases to 6.01:1 when a societal perspective is taken. However, around 13.0 homozygote births are still expected to occur, the majority owing to lack of compliance of patients at various stages in the screening process. The addition of a national health education programme for the higher risk non-Jewish population either nationally or in selected regions will incur extra costs, which may be covered by increased benefits as a result of better compliance with the screening programme. Conclusion-Israel should start to provide a nationwide thalassaemia screening programme as the monetary benefits to society (and even to the health services alone) will exceed the screening programmes costs. (J Med Screen 1998;5:120-126)

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“…Countries with high prevalence of thalassemia such as Cyprus, 6,7 Greece, 8,9 Italy, 10,11 and others initiated national prevention and control programs in the early 70s, leading consequently to drastic reductions in the number of affected births. Such considerable improvements in the preventive efforts spared valuable societal resources 12 that were devoted for improved clinical care for existing thalassemia patients resulting in prolonged survival rates and improved quality of life.…”

Section: Establishment Of Thalassemia International Federationmentioning

confidence: 99%

The Thalassemia International Federation: A Global Public Health Paradigm

Soteriades

Weatherall

2014

Thalassemia Reports

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Many international organizations are struggling today to coordinate limited economic and human resources in support of governments' efforts to advance public health around the world. The United Nations and the World Health Organization, along with others play a pivotal role in this global effort. Furthermore, during the past few decades an increasingly higher percentage of global efforts on public health are carried out by specific health initiatives, international projects and non-governmental patient-oriented organizations. The Thalassemia International Federation (TIF) is one such organization focusing on the control of thalassemia around the world. The current paper aims at presenting a comprehensive overview of the mission, goals, objectives and activities of this organization. Our ultimate goal is to highlight TIF's public health paradigm and diffuse its success at an international levels for others to follow. TIF is devoted to disseminating information, knowledge, experience and best practices around the world to empower patients with thalassemia and their relatives, support health professionals providing care to such patients and promote national and international policies, which secure equal access to quality care for all patients with thalassemia.

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Prevention of Thalassaemia Major in Latium (Italy)

Cited by 13 publications

References 5 publications

The Impact of Migrations on the Health Services for Rare Diseases in Europe: The Example of Haemoglobin Disorders

The Impact of Migrations on the Health Services for Rare Diseases in Europe: The Example of Haemoglobin Disorders

Cost-benefit analysis of a national thalassaemia prevention programme in Israel

The Thalassemia International Federation: A Global Public Health Paradigm

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