Title |
Organizing national responses for rare blood disorders: the Italian experience with sickle cell disease in childhood
|
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Published in |
Orphanet Journal of Rare Diseases, October 2013
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DOI | 10.1186/1750-1172-8-169 |
Pubmed ID | |
Authors |
Raffaella Colombatti, Silverio Perrotta, Piera Samperi, Maddalena Casale, Nicoletta Masera, Giovanni Palazzi, Laura Sainati, Giovanna Russo, the Italian Association of Pediatric Hematology-Oncology (AIEOP) Sickle Cell Disease Working Group |
Abstract |
Sickle cell disease (SCD) is the most frequent hemoglobinopathy worldwide but remains a rare blood disorder in most western countries. Recommendations for standard of care have been produced in the United States, the United Kingdom and France, where this disease is relatively frequent because of earlier immigration from Africa. These recommendations have changed the clinical course of SCD but can be difficult to apply in other contexts. The Italian Association of Pediatric Hematology Oncology (AIEOP) decided to develop a common national response to the rising number of SCD patients in Italy with the following objectives: 1) to create a national working group focused on pediatric SCD, and 2) to develop tailored guidelines for the management of SCD that could be accessed and practiced by those involved in the care of children with SCD in Italy. |
X Demographics
Geographical breakdown
Country | Count | As % |
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United Kingdom | 2 | 50% |
Mexico | 1 | 25% |
Unknown | 1 | 25% |
Demographic breakdown
Type | Count | As % |
---|---|---|
Scientists | 2 | 50% |
Practitioners (doctors, other healthcare professionals) | 1 | 25% |
Members of the public | 1 | 25% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
Belgium | 1 | <1% |
Unknown | 108 | 99% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Student > Ph. D. Student | 17 | 16% |
Student > Master | 17 | 16% |
Student > Bachelor | 11 | 10% |
Researcher | 9 | 8% |
Student > Doctoral Student | 8 | 7% |
Other | 21 | 19% |
Unknown | 26 | 24% |
Readers by discipline | Count | As % |
---|---|---|
Medicine and Dentistry | 38 | 35% |
Nursing and Health Professions | 9 | 8% |
Social Sciences | 7 | 6% |
Psychology | 5 | 5% |
Biochemistry, Genetics and Molecular Biology | 3 | 3% |
Other | 16 | 15% |
Unknown | 31 | 28% |