The Register of Paediatric Inflammatory Bowel Disease

1. The register is no longer seeking retrospective consent from all patients previously registered. This was an impractical constraint for registering clinicians.
   
2. A new "Consent and Registration" process is being initiated. We hope that this will overcome some of the cumbersome features, which previously obstructed the consent procedure. Important aspects of this new process are detailed below.

• There will be a pack for each patient. (I-IV combined document) Each pack will contain:-
  
  I. Letter of Invitation
  II. Information for Patient’s Parents or Guardian
  III. Patient Information for Children
  IV. Consent Form
  V. Questionnaire
  
  It would seem reasonable to facilitate the process by presenting the information to the patient/parent at diagnosis or at the first consultation following diagnosis and the patients name added to a list of who has received this information. Subsequent consent or withholding of consent could then be presented to the clinician at the next consultation, placed in the patients medical notes and a completed questionnaire sent to the register (see Flow Chart) .
  
• Each centre will receive labels to attach to the notes of those patients newly diagnosed with Inflammatory Bowel Disease. They indicate the date on which the information pack was provided, whether consent was given or withheld and the date on which the completed questionnaire was sent to the register.
  
• Each contributor will receive a monthly e-mail requesting how many newly diagnosed IBD patients have they seen and their gender. We have been granted MREC approval to keep this data even if consent is not obtained. This will allow more accurate incidence data to be obtained.
  
• A mechanism is in place to correlate this non-identifier information with receipt of completed questionnaires. We will thus be able to request registration details, which are due but have not been received.
  
• The content of the questionnaire has been definitively decided. We have sought to limit questions asked in order to ensure the accuracy of data and the minimum imposition on the time commitment required to complete it.

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