fabio@gastrosaude.com Fabio V. Teixeira, MD, MSc, PhD 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

26 states São Paulo (8) capital Headquarter and 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

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

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

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

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

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

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

EXPECTED RESULTS 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) As Brazilian population has a huge influence of Europeans and Africans, we would like to analyse our genetic profile and compare to the literature. INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS

EXPECTED RESULTS 3- Resources in cities with up to 200.000 inhabitants: is it possible to have a safe diagnosis in those places? 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. INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS

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

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

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

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