1. 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
EVENT ORGANIZED BY EFCCA

2. 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

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/ %
South: 3/ %
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 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:
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 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
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

10. EXPECTED RESULTS
3- Resources in cities with up to 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 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

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. Walk against IBD – May 19th
education
Walk against IBD – May 19th