ArticleOrphanet journal of rare diseases2014
Haemoglobinopathies in Europe: health & migration policy perspectives.
Article in Orphanet journal of rare diseases, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT06019208 (Genomics and Personalized Medicine for All Though Artificial Intelligence in Haematological Diseases), which is not on this map. Cited by 43 papers.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Genomics and Personalized Medicine for All Though Artificial Intelligence in Haematological Diseases
Who cites it
43 citing papers in PubMed, 97 citations in OpenAlex.
- EHA Recommendations for preconceptual and antenatal screening and prenatal diagnosis for hemoglobinopathies.HemaSphere · 2026Article
- Mapping diagnostic practices in hemoglobinopathies: a cross-country HELIOS COST Action study.Blood advances · 2026Article
- FAIR data gaps and collaboration willingness among hemoglobinopathy research centers.Scientific data · 2026Article
- A Comprehensive Gap Analysis of Risk Factors for Transfusion Dependent Thalassemia in Siblings.Indian journal of hematology & blood transfusion : an official journal of Indian Society of Hematology and Blood Transfusion · 2025Article
- Mortality, Clinical Complications, and Healthcare Resource Utilization Associated with Managing Transfusion-Dependent β-Thalassemia and Sickle Cell Disease with Recurrent Vaso-occlusive Crises in Italy.PharmacoEconomics - open · 2025Article
- International dissemination of Brazil's public health system and its technical cooperation initiatives for sickle cell disease, 2006-2010.Historia, ciencias, saude--Manguinhos · 2025Article
- Ten years of a neonatal screening program for hemoglobinopathies in Friuli-Venezia Giulia: first regional experience in Italy.Blood transfusion = Trasfusione del sangue · 2024Article
- Understanding Rare Anemias: Emerging Frontiers for Diagnosis and Treatment.Journal of clinical medicine · 2024Review
- Current Status of Molecular Diagnosis of Hereditary Hemolytic Anemia in Korea.Journal of Korean medical science · 2024Review
- Article
- In Silico Structural Protein Evaluation of the Phenylalanine Hydroxylase p.(Tyr77His) Variant Associated with Benign Hyperphenylalaninemia as Identified through Mexican Newborn Screening.Children (Basel, Switzerland) · 2023Article
- The pivotal role of HbA1c assay to detect hemoglobinopathies: A 5-year observational retrospective study in the population of Southern France.Health science reports · 2023Article
- Hemoglobinopathy screening in primary care in the Netherlands: exploring the problems and needs of patients and general practitioners.European journal of human genetics : EJHG · 2023Article
- A rapid evidence assessment of sickle cell disease educational interventions.Journal of clinical nursing · 2023Article
- Comparison between Sickle Cell Disease Patients and Healthy Donors: Untargeted Lipidomic Study of Erythrocytes.International journal of molecular sciences · 2023Article
- Zinc level and effect of zinc supplementation on growth in a subset of Sudanese children with sickle cell disease.Sudanese journal of paediatrics · 2023Article
- Global Globin Network Consensus Paper: Classification and Stratified Roadmaps for Improved Thalassaemia Care and Prevention in 32 Countries.Journal of personalized medicine · 2022Article
- Identification of optimal thalassemia screening strategies for migrant populations in Thailand using a qualitative approach.BMC public health · 2021Article
- Blood Demand and Challenges for Patients With Beta-Thalassemia Major in Eastern Saudi Arabia.Cureus · 2021Article
- Feasibility of and barriers to thalassemia screening in migrant populations: a cross-sectional study of Myanmar and Cambodian migrants in Thailand.BMC public health · 2021Article
Corrections and comments
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Authors and funding
7 authors at 3 institutions in 3 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundMajor haemoglobinopathies (MH), such as thalassaemia syndromes (Thal) and sickle cell disorders (SCD), are genetic defects associated with chronic anaemia and other complications. In Europe, MH are rare diseases (RD) but their prevalence is significantly growing in many countries due to mobility and migration flows. This creates a growing health problem in the EU that has not yet been effectively addressed by Member States (MS) authorities. The present study has been conducted with the aim of: (i) providing an overview of policies for MH in 10 EU member states (MS) (ii) analysing the challenges linked to these RD due to growing requirements imposed by population, mobility and migration trends and (iii) identifying gaps, proposing improvements on existing policies, or developing new ones to fit the identified needs.
methodsThe study has been undertaken by a group of members of the European Network for Rare and Congenital Anaemias (ENERCA) and the Thalassaemia International Federation (TIF), in collaboration with the public affairs firm Burson-Marsteller Brussels. Data from 10 EU countries have been gathered using targeted desk research and one-to-one interviews with local stakeholders, including healthcare professionals, patients and public health officers/providers.
results1. MH are the most common RD in all the 10 countries, 2. Data on prevalence, overall burden, trends, and clinical follow up costs are lacking in most countries. 3. Neonatal screening practices show a wide variation across and within countries. 4. Awareness on MH and their related complications is very low, exception made of Italy, Greece, Cyprus and UK, 5. No disaggregated data is available to understand the impact of mobility and migration on the prevalence of haemoglobinopathies, and how healthcare delivery systems should adapt to respond to this situation. 6. Targeted policy measures and/or actions are generally lacking and/or delayed.
conclusionsTen policy recommendations have been drawn from this study, building on 2006 WHO recommendations for MH to include haemoglobinopathies in National Plans of Actions for Rare Diseases.
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