The Register of Paediatric Inflammatory Bowel Disease

1. Lucy Taylor, Research Assistant to the register, has taken maternity leave until October 2003. In her place we have appointed Carla Roberts. Carla will be working flexible part time, however she will be generally available Monday to Wednesday between 09:00 and 16:00. She can be contacted on 0151 293 3566 or e-mail: robertsc@liverpool.ac.uk .
   I would like to welcome Carla to the register and hope that you will not hesitate to contact her with any concerns or issues you would like to raise.
   
2. The "Consent and Registration" process has undergone a radical restructuring in order to make it quicker and more user friendly. For fuller details please click on "Consent and Registration Process". Basically this will allow us to keep non-identifier details where consent has been withheld. It will make obtaining consent a one-step process and it will allow us to maintain regular contact with you to keep up-to date with data on newly diagnosed patients.
   
3. We have developed a new data-base which will automate much of the checking and updating of data. It will also allow regular contact with the NHS Numbers commission. Being able to collect the NHS numbers for each consented patient will facilitate long-term follow-up and flagging of patients. This represents an important advance in the contribution, which the register will make to our understanding of inflammatory bowel diseases.
   
4. Plans for the future include internet registration and access to your patient data via the NHS web. However there are many issues around confidentiality and the Data Protection Act which need to be addressed before these initiatives can be rolled out.
   

top...