1. INTERNATIONAL SYMPOSIUM ON FUNDED BY PATIENTS' ORGANISATIONS
IBD RESEARCH
FUNDED BY PATIENTS' ORGANISATIONS
“ROADMAP”
Brussels 18 October 2012
Hotel Métropole
EVENT ORGANIZED BY EFCCA

2. SUGGESTED CHAPTER (change title as necessary): INTRODUCTION
Swedish stomach and Bowel Patient Association
Tree different funds
1) The fund of Swedish Stomach and Bowel Association (1994)
2) Elmernäs research fund (2006)
3) Stomach and Bowel foundation for Swedish gastroentereological and hepatological research (2008)
INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

3. Tree different funds
1)The fund of Swedish Stomach and Bowel Association (1994).Distributes around 5800 euro per year. Was created as our own fund in connection with a big broadcasting campain for diseases in bowel and stomach.
2) Elmernäs research fund (2006)
An inheritance from a couple in Sweden with the aim to support research. The money should be distributed in 10 years starting in 2007.
Distributes around euro per year
3) Stomach and Bowel foundation for Swedish Gastroentereological and hepatological research (2008)
Distributes around euro per year. Is created by our patient association, the swedish professional gastroenterological association and Abbott.
INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

4. Some examples of research
Some example of research, supported from the 3 foundations
a) Oral health in patients with Crohn´s disease
b) Internet based self reporting of symptoms’ by youth with IBD
c) To live with familiar adenomatös polypos (FAP)
d) To live with irritable bowel syndrome. The perspective of patients on everyday life, healthcare and patient education
e) Improving the health related quality of life of patients with inflammatory bowel disease
INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

5. more examples
f) Developing biomarkers to predict response from TNF-restrictors when IBD
g) Research about capsule endoscopy
h) Research about reflux
i) Research about skleroserande colangite
INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

6. Oral health in patients with CD
1) The aim is to investigate perceived oral health in patients with CD in comparison with a control group
2) To verify by clinical studies that the perceived oral health is true.
3) To work out a program for mouth health helping people with CD
4) To analyze the dental consumption by CD:s
INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

7. Background
Many members with CD in our association were complaining about problems with the teeth and gums
Few studies earlier done
INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

8. Our study about perceived oral health
A questionnaire was sent to 1943 persons with CD. 88 % answered or 1598 persons
A control group of 1000 was selected at random .75 % or 748 answered
The questions were about level of illness, treatment, oral health, oral habits, dental care, food habits, smoking and others
INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

9. Result in columns
Red=CD
Yellow=Control group
From left to right:
tooth ache, caries, broken or lost filling, broken crown, cold sore, bad breath, dryness in the mouth
Comments: no differences in oral hygienic habits; a possible explanation to differences is food habits. CD:s eat more frequently, and fat reduced food, with more carbohydrates.
This study is finished
INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

10. The result
Shows very clear that people with CD perceive their oral health much worse compared to controls.
They also have a greater need for dental care. The answers also showed that persons with CD had much more problems with teeth and gums.
Toothache and caries were more than double as common in patients with CD compared to controls.
INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

11. Clinical study has started:
The clear results have motivated further studies; clinical, radiation, analyses of bacteria in mouth and carefully made descriptions of food habits
What factors can cause caries? The study will comprise the measuring of gums inflammation, bacteria plaque and the existence of gums pockets.
200 persons with CD; 100 in a control group
Preliminary results show:
CD:s have more bacteria plaque on teeth 57,5 % compared to controls 17 %.
56,1 % had Inflammation in gums compared to 21,5 by controls.
Bacteria on teeth is much more frequent by CD:S .
INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

12. Clinical study has started:
The two preliminary results indicate that CD:s have a higher risk for caries and a higher inclination for inflammation in gums.
Except for finishing the clinical study the research group will work out a program for mouth health.
Another project planned is to analyze the dental consumption by CD: s. This study will comprise CD: s that has been sent to hospital during the last 15 years.
INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

13. Dental Insurance reform
In Sweden they will introduce a new dental reform for people with different chronic diseases ( ). Our association has used the results from this project. Persons with IBD will be included in a group of 15 categories that will be given an economical support –dental care cheque- in order to prevent dental diseases. Twice a year UC and CD patients will get 600 Sw. crowns or 1200 /yearly for dental preventive care (135 euro).
We are happy to have managed to benefit from this research economically for our members/patients.
INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP