As a condition of inclusion within the database holding the details of potential participants, prior written consent to postal surveys had been obtained. Under these circumstances, it was deemed that a returned questionnaire would be taken as implied consent. This approach was approved by the Health Research Authority and Research Ethics Committee.

The patient information sheet (PIS) explained that there was no direct benefit to participants, nor any perceived potential for harm. However, subsequent patients may benefit by earlier and more accurate diagnosis with the potential for more rapid and potentially effective therapeutic intervention.