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Table 3 Ten major recommendations to improve diagnosis and care of patients with haemoglobin disorders in European countries

From: Haemoglobinopathies in Europe: health & migration policy perspectives

Recommendation Target Means of implementation Potential obstacles to be overcome
1. Develop and effectively implement data collection and analysis systems Health professionals, Ministry of health, Epidemiologists Establish registries and databases to ensure adequate and consistent collection and analysis of data Financial, Ethical and legal
2. Develop and implement targeted programmes to address haemoglobinopathies Heath professional, Specialized physicians, Primary care doctors (for the initial diagnosis and every day follow up), Healthcare managers Develop medical education, professional guidance and protocols on prevention, management and treatment of Hb disorders, Improve access to innovative screening such as MRI or intracranial echo doppler Financial
3. According to the specific national needs, provide for adequate specific measures to address haemoglobin disorders in the framework of National Rare Disease Plans National health authorities, Governments Comprehensive action plan with targeted actions and measurable objectives; shaped in dialogue with the healthcare community and patients Poor awareness of broader societal burden of the diseases and impact assessment of targeted plans
4. Establish centres of reference or expertise for: Harmonized and easy access to diagnosis, treatment and specialised care and comprehensive follow-up of patients, Preventing and improving early and specific diagnosis of haemoglobin disorders by the development of newborn screening programmes for sickle cell disease where necessary and their protocols to ensure consistent screening practices, National health authorities, Governments, National health authorities, Governments, Healthcare professionals and managers Adoption of ENERCA recommendation for recognition of Centers of Expertise at National level Lack or delayed implementation of National Plans or Strategies for rare diseases.
5. Fund research on haemoglobinopathies International, EU and national authorities in charge of research programmes, Pharmaceutical companies Rare Anaemias have to be included in the European and National Research Programmes Financial restrictions
6. Implement and support education and awareness measures targeted at the general public, haemoglobin patients and potential carriers, including different migrant and ethnic minority groups General public, Patients, Patient support groups, Health professionals, National Health Authorities Effective information and education measures should be tailored to the different range of ethnic minority groups. Easily accessible information materials should be developed, which target couples and children and describe the most important aspects of haemoglobinopathies diagnosis and prevention. Financial, Language and cultural barriers
7. Implement and actively support targeted healthcare professional education and training programmes with a particular focus on the prevention, diagnosis and management of haemoglobinopathies European and national Scientific Societies, Ministries of Health and ministries of education Increase the part given to rare anaemias in the European Haematology curricula and continuing medical education Lack of multicultural care competencies development of healthcare practitioners, Lack of dedicated health professionals
8. Support the empowerment and participation of patients and the healthcare community Patients Associations and Health care Community Increase of communication channels between patients and professionals and shape policies that respond to the specific needs of patients with haemoglobinopathies and develop multicultural healthcare delivery methods Social and cultural inequalities across Europe
9. Support the development and implementation of guidelines and standards of care and prevention of haemoglobin disorders and linked sequels Scientific and professional societies and National health care Authorities Development of coordinated activities between health professionals and authorities for improving the quality of healthcare delivery The existence of inequalities in the health care provision across Europe and within individual countries
10. Adopt specific measures aimed at addressing healthcare staff shortages Health Authorities and Medical Centres Diversification of health staff origins, increasing the professional/patients ratio and assuring multidisciplinary care Lack of specialists and financial restrictions