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The Brazilian CF Study Group (BCFSG) was founded in November, 2003 by fifteen doctors from several reference CF centers in the country, who gather once or twice a year to evaluate their progress and discuss new lines of work. BCFSG’s objectives are:
• To provide information to patients who have CF and their families.
• To promote studies and research, preparation of technical standards, rendering of technical consultancy to pubic and private health authorities, the production and publicity of information and technical and scientific knowledge.
• To stimulate the organization of the Brazilian CF Records (REBRAM).
• To promote and support the scientific events aimed at improving the qualification of the professionals who work with CF.
• To stimulate the introduction of exams that provide for early diagnosis of CF.
Brazil is a country that is fifth in the world in terms of area and population (approximately 190 million inhabitants). The population is ethnically diverse, with Europeans, Amerindians, Asians, and blacks. In the late 19th century and early 20th century, European and Asian immigration increased considerably. The country currently has a high percentage of European immigrants, especially Spanish, German, Italian (the largest concentration of Italians outside Italy is in Brazil) and Slav origin, but people with Portuguese descent make up the largest group of immigrants. Thus, the country’s official language is Portuguese. Racial integration is widespread, resulting in a hybrid population. Brazil is located between the tropics, and its climate varies little, except for in the southern region, which has subtropical weather and well-defined seasons, and where winter can be severe.
 | Dr. Neiva Damaceno, President of the First Brazilian Cystic Fibrosis Interdisciplinary Conference addressing the plenarium |
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CF research in Brazil started in 1967 at the Fernandes Figueira Institute in Rio de Janeiro. Dr. Ludma Dalallana introduced a test routine for the concentration of electrolyte in sweat. In 1972, a CF Unit was organized in the same hospital, offering outpatient care to CF patients, and which became, for many years, the reference center for patients from all over Brazil.
Over time, new centers began to appear in different cities, such as San Paulo, Belo Horizonte, and Porto Alegre. Currently, there are thirteen centers throughout Brazil, and new centers are opened from time to time, especially in the country’s north and northeastern regions. The work developed by the professionals in their respective centers has been extremely valuable. Many centers have presented important scientific findings, both in scientific publications and as free themes in international congresses. With the improvement of the service offered to CF patients, there is a large population of adolescents and adults, and pulmonary and hepatic transplant programs in several Brazilian states.
The estimated incidence of CF in Brazil varies from area to area in the country, and averages 1:2,000 live-born infants in Southern states and 1:7,000 in Middle Western and Northern states. Currently, there are over 2,500 diagnosed cases being treated in several centers; however, we believe that this is a fraction of the real number of CF patients in Brazil, most still undiagnosed. The greatest problem and challenge still is underdiagnosis, as we believe that only 20% of all patients are being accurately diagnosed.
The first CF meeting in Brazil was held in 1975, in Rio de Janeiro, after which there was one meeting held every two years, always in association with the Brazilian Pediatric Pneumology Congresses, promoted by the Brazilian Pediatrics Society. With the foundation of the Brazilian CF Study Group, the increasing number of professionals working with CF, and with the establishment of consolidated diagnosis and treatment centers, it was time to organize an independent congress, where the multidisciplinary approach would be valued.
 | Brazilian CF Study Group |
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In April 2006 the first Brazilian Interdisciplinary CF Congress was held in San Paulo, sponsored by BCFSG. The Congress included several courses, such as:
Leadership for Patients and Parents, Introduction to CF for Parents, Microbiology of Sputum, Physical Therapy, Nutrition, Concentration of Electrolyte in Sweat, Nursing, and a Pre-Congress and Congress Medical Course.
Cystic Fibrosis Worldwide was represented at the congress by President Mitch Messer, who came from Australia to open the meeting. The visits of Louise Lannefors, who was responsible for the Physical Therapy Course, and Susan Madge, who was responsible for the Nursing Course, were sponsored by CFW. The Congress was attended by approximately 450 professionals and international professors including Gerd Doering, Jan van Nierop, Margarida Amaral, Mark Montgomery, Jeffrey Wagener, and Peter Durie.
The next Congress will be held in Salvador, in the country’s northeastern region, in 2008. We hope to have another successful. We have also assured the inclusion of the CF topic in other future national congresses.
One of the objectives of the Group is to develop national protocols for the diagnosis and treatment of CF. The board of directors has met with the National Health Assistance sector of the Ministry of Health in Brazil, and discussed several topics of interest, such as the preparation of a national program for the diagnosis and treatment of CF at a national level. All are aware that the introduction of such a program in a developing country with continental dimensions is a difficult task, but not an impossible one.
 | Dr. Fernando Antonio de Abreu e Silva |
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The diagnosis program focuses on the establishment of a neonatal screening program and the creation of laboratories for measuring the concentration of electrolyte in sweat with quality control. As for treatment, careful planning has been made in order to obtain proper and comprehensive treatment so that patients from different regions of the country have access to medication. Currently, there is no uniform treatment throughout the different regions of the country. The Ministry of Health is considering the inclusion of CF in the Basic Health Program, through the training of technicians of the Unified Health System, which will provide great visibility and coverage at a national level.
Last year BCFSG translated and adapted the outpatient care program created by Professor Patrick Lebecque, from the Université Catholique de Louvain, Belgium. Lebecque kindly provided BCFSG with the electronic protocol, which was placed at the disposal of all centers who see CF patients in Brazil. In addition to this program, BCFSG offers consultancy in qualification centers and, through its website, http://www.gbefc.org.br, answers questions from professionals, patients, families and communities from different parts of the country.
In a developing country in which the priorities in the health area are many, we believe we have achieved a great deal, as both the diagnosis and treatment of CF have shown considerable progress at a national level over the past few years. However, much remains to be done, but we are optimistic, because our efforts have been fully rewarded and our starting partnership with public health sectors will certainly
translate into a greater recognition of the condition in Brazil.
Dr. Fernando Antonio de Abreu e Silva, MD, PhD, specialized in Respiratory Care in Porto Alegre, Brazil and Edinburgh, Scotland where he did his post-graduate studies. He is currently a Professor of Pediatrics at the Universidade Federal do Rio Grande do Sul, Director of the CF Unit and Care Center at the Hospital de Clínicas de Porto Alegre, and President of the Brazilian CF Studies Group.
