This information has been prepared for the interest of parents and guardians of children and adolescents diagnosed with inflammatory bowel disease - Crohn's disease or ulcerative colitis.

ACCAQ wishes to encourage participation in this project, as it will be central to the treatment of children with inflammatory bowel disease. We hope that the following information and the forms provided will help facilitate your decision to take part.

Established by Australian Paediatric Gastroenterologists in 1995, the database is a register of information on IBD in children and adolescents. By grouping together information of as many children and adolescents as possible from all over the country, this large single base of patient information will help establish population trends and patterns, as well as provide a resource for research.

The type of information stored in the system includes clinical details at presentation and annual follow-up, treatment and response, investigations, and any complications arising from the IBD. This information is obtained from a questionnaire completed by the treating doctor.

The Ethics Committees of all participating hospitals have approved the register, however you can be assured that if additional research projects were planned, each project would need to be submitted for ethical approval. Strict confidentiality is adhered to at all times. Details of your name and address and of the child's/adolescent's name and address cannot be revealed to any person unrelated to the database.

Participation is voluntary. If for any reason you want to withdraw from this register, the level of care given to you, or you and your child/adolescent, will not be altered in any way. There is no cost to participate, nor is there any payment involved for taking part. The database is centralised at the Gastroenterology Department of the Women's and Children's Hospital, North Adelaide, South Australia 5006.

Paediatric gastroenterologists are very interested in this project and can answer any questions that their young patients and parents or guardians may wish to ask. If preferred, the IBD Database Central Coordinator, Dr David Moore, can be contacted at the Women's and Children's Hospital in North Adelaide on telephone (08) 8161 7352 or fax (08) 8161 6088.

To participate, please download and complete the Informed Consent Form and the Patient Demographics Form available from this site and return to: ACCAQ, PO Box 497, Buddina Qld 4575