INTRODUCTIONSickle Cell Disease (SCD) is the most common genetic disease worldwide. In the past decades advances in basic research and clinical investigations have produced a marked decrease in morbidity and mortality during early childhood. Newborn screening, prophylactic penicillin, effective vaccinations, and stroke prevention have largely contributed to these results [1][2]. Even though comprehensive medical care has been shown to decrease health care resource utilization and to improve quality of life [3] for patients with SCD, in the United States only 36% of children with SCD perform at least one hematology visit per year for comprehensive care [4] and the rate of missed appointments is around 45% [5]. Moreover, although medical advances have resulted in availability of improved treatments for children with SCD, less than 50% are enrolled in Transcranial Doppler (TCD) screening programs for stroke prevention both in Europe [6][7] and the United States [8][9].In many countries SCD affects people belonging to minority communities, such as African Americans in the United States or African immigrants in Europe [10]. Immigrants present cultural, social, and financial barriers in accessing the health system and these factors have an effect on the management of chronic illnesses [11][12][13].New models of comprehensive care need to be developed in order to ensure that all patients with SCD receive high quality care and benefit from the advances in clinical research, overcoming patient-related and health system-related barriers to specialized health care [14].Italy does not have a hemoglobinopathy newborn screening program and for many years pediatric hematology services have focused primarily on thalassemia. SCD has emerged as an important health condition in the last decade due to immigration, mainly from Africa and Albania, and the number of affected children is steadily increasing [15]. The majority of patients are diagnosed with SCD in the Emergency Room during acute events or because referred to a specialized center by the pediatric general practitioner, by friends or relatives. SCD is considered a rare disease and, according to the legislation of European countries, if a patient is registered as having a rare disease by a specialized reference center, patients and families can apply for disability benefits, care is free, and drugs are provided almost for free, with only a minimum contribution (prescription token). Children usually refer to their pediatric general practitioner for routine primary care, to local hospitals for emergencies and to tertiary care reference centers for specialized care.The Clinic of Pediatric Hematology-Oncology of the Azienda Ospedaliera-Università di Padova began assisting patients with SCD in 2003.From 2003 to 2005, several patient-related and health-operator related barriers to care had been noted. Patient-related barriers in seeking and accepting care regarded mainly language difficulties, socioeconomic factors (no permit of stay, precarious living conditions, low income, dif...
In complete control: The magnitude of current rectification in well‐defined supramolecular tunneling junctions can be controlled by changing the terminal functionality (red spheres) of dendrimers (gray spheres) immobilized on a supramolecular platform (see picture). Junctions containing biferrocene and ferrocene end groups showed larger rectification ratios than junctions containing adamantyl end groups.
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