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INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS' ORGANISATIONS

INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS' ORGANISATIONS Brussels 18 October 2012 Hotel Métropole. Fabio V. Teixeira, MD, MSc , PhD Medical Director ABCD Regional Branch Marilia, São Paulo State - BR A ZI L.

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INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS' ORGANISATIONS

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  1. INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS' ORGANISATIONS Brussels 18 October 2012 Hotel Métropole Fabio V. Teixeira, MD, MSc, PhD Medical Director ABCD Regional Branch Marilia, São Paulo State - BRAZIL Brazilian Association of Ulcerative colitis and Crohn’s Disease fabio@gastrosaude.com EVENT ORGANIZED BY EFCCA

  2. 26 states • São Paulo (8) capital Headquarterand 7 branchs • Paraná (3) • Rio de Janeiro (2) • Minas Gerais (1) • Goiás(1) • Ceará (1) • Rio Grande do Norte (1) • Rio Grande do Sul (1) • Santa Catarina (3) • Pernambuco(1) • Brasilia – DF (1) • TOTAL 22 branchs

  3. Brazilian Association of Ulcerative Colitis and Crohn´s Disease INTRODUCTION ABCD is a non-profit organization founded in February 4, 1999 São Paulo ABCD: 1 headquarter and 22 branchs Covered: 16/26 states Southeast: 4/4 100% South: 3/3 100% Northeast: 9/3 33% Middle west: 4/1 25% North region: 6/0 0% INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS

  4. Main Aim • ABCD aims to bring together patients of IBD (Inflammatory Bowel Diseases) and the health professionals involved in their care in order to provide the exchange of experiences and facilitate sharing the informations and patients needs

  5. Local organization • IBD nurse andsecretary • Medical director • Patients volunteers • Local Board • Meetings (6 to 7/ year) • Education • Nutricional and psicologic support • Fundingprovidedbytheheadquarterand local donations IBD nurse Paula Teixeira: abcd.marilia@abcd.org.br INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS

  6. Marilia West – Branch SP state São Paulo(SP) State capital

  7. RESEARCH PROJECTs 1- Anti-TNF antibody and trough level detection in Brazilian patients with IBD (does it happen together with loss of response?) 2- Genetic analysis (Nod 2 mutation) in Brazilian patients with IBD. Comparison between region north/northeast (more rural and less developed regions) and region south/southeast (more urban and developed regions) 3- Resources in cities with up to 200.000 inhabitants: is it possible to have a safe diagnosis in those places? 4- IBD registry in Brazil and South America INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS

  8. EXPECTED RESULTS 1- Anti-TNF antibody and trough level detection in Brazilian patients with IBD (does it happen together with loss of response?) • > 40% will fail anti-TNF therapy over the years. We wondered whether Brazilian patients will have the same finding reported in other population. INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS

  9. EXPECTED RESULTS • As Brazilian population has a huge influence of Europeans and Africans, we would like to analyse our genetic profile and compare to the literature. 2- Genetic analysis in Brazilian patients with IBD. Comparison between region north/northeast (more rural and less developed regions) and region south/southeast (more urban and developed regions) INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS

  10. EXPECTED RESULTS • We expect to find more problems to make the diagnosis of IBD in cities up to 200.000 people. However, cities located in the southeast and south of Brazil may have the same resources found at big cities. 3- Resources in cities with up to 200.000 inhabitants: is it possible to have a safe diagnosis in those places? INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS

  11. EXPECTED RESULTS 4- IBD registry in Brazil and South America • We do not have any reliable data in Brazil regarding IBD. Just few reports. INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS

  12. GENERAL DATA The possible funds for the research project will have to be raised from donations and from Pharmaceutical Companies support. Moreover, we are trying to make some agreements with hospitals and medical schools. To date, we have no funds from the Brazilian government to support our planned projects. INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS

  13. CONCLUSIONS • Brazil is a continental country with almost 200 million people • ABCD is present in 16/26 states • South and Southeast are better covered • Prevalence of IBD is higher in the south/southeast ? • Data are still missing – we do need a IBD registry ASAP • We DO believe that information is the only way to change this scenario: physician and patients • Patient’s associations and organizations are the best way to do it INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS

  14. education Walk against IBD – May 19th secretaria@abcd.org.br

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