Rare disease infant botulism. Italy-Argentina a new scientific collaboration based on previous experience

FENICIA L, FERNÁNDEZ RA, ANNIBALLI F, DE JONG LIT, PAREJA V, LÚQUEZ C, BIANCO MI, VANELLA E, DE MEDICI D, AURICCHIO B, DELIBATO E, DE CASTRO P, MARSILI D, POLTRONIERI E, LOCATELLI C, LONATI D

Buenos Aires

Conferencia; VIth International Conference on Rare Diseases and Orphan Drugs in Buenos Aires (ICORD 2010); 2010

International Conference on Rare Diseases and Orphan Drugs

Infant botulism (IB) is a rare disease originally recognized in USA in 1976. Although IB has been detected on almost all continents, reports of cases have been distributed unevenly. Other than USA, where the IB is the most frequent form of botulism (2614 cases between 1976-2008; average incidence: 2.1 cases/100,000 live births), Argentina has reported the largest number of cases in the American continent and in the world (507 cases between 1982-2008; average incidence: 2.2 cases/100,000 live births). In the other hand, Italy has reported the larger number of cases in Europe (30 cases between 984-2009; average incidence: 0.2 cases/100,000 live births). The perceived incidence of the IB remains more a reflection of physician awareness and access to diagnostic testing than of the actual occurrence of disease. The knowledge of the different aspects of the disease is the first step for early diagnosis and prompt treatment of patients. Human botulism immunoglobulin BabyBIG® is the antitoxin of choice for specific treatment. However, its high cost severely limits its use in many countries. Equine botulinum antitoxin might be considered as an alternative with a strict therapeutic protocol considering the particular age of patients. Epidemiological data indicate that a higher number of cases have been reported in countries that have: (1) developed scientific knowledge on IB; (2) a central surveillance system on botulism, particularly in IB; (3) a specific program on IB (e.g. Infant Botulism Treatment and Prevention Program in California). In Argentina, since 1982, and in Italy, since 1984, when the first cases were diagnosed and a national surveillance system was started, a large number of data were collected and several research projects were performed. Based on the experience of both Italy and Argentina on IB, collaborative studies should be very useful to improve and disseminate information worldwide. These scientific activities will be also developed and supported within the European project NECOBELAC (www.necobelac.eu). NECOBELAC, as reported during ICORD 2009 meeting in Rome, intends to spread know-how in scientific writing and open access publishing both among researchers and the general public for the safeguarding of public health. At the same time this project also aims to develop or strengthen a network of scientific collaboration between Europe and Latin America. In this framework, the first goal of Italy-Argentina collaboration on IB is to publish a paper in an Open Access journal on a comparison of the different experiences related to clinical, microbiological, and epidemiological characteristics of reported cases of IB. This will help to spread important information on IB, to strengthen research collaborations and to make this information freely available online for all interested parties. Publication of case reports and surveillance summaries will enhance knowledge of the global epidemiology of IB and enable its improved diagnosis, treatment, and prevention.