Patients and their doctors should discuss if they are keen to contribute to the ISPAD Rare Diabetes Collection. If there are any initial enquiries about whether it would be appropriate then an email should be sent to Professor Hattersley in Exeter - Andrew.Hattersley@pms.ac.uk

If the patients and doctors consent then it will be a case of sending a blood sample and clinical details to Professor Hattersley in Exeter. We would ask that a MODY diagnostic request form is filled out and/or any additional clinical details are given in a full typewritten report. Ideally this should be in English but translation facilities exist within ISPAD if this is not possible.

What will happen in Exeter?

In Exeter the blood will be made into DNA and stored in an anonymous form with no identifying details. The clinical details will be assessed and it will be looked at to determine whether it is likely to represent a known diabetes syndrome or a syndrome which has not been identified.

If it is seen that there is likely to be a benefit if the DNA is sent to an international scientific expert then an email requesting this will be sent to the referring physician. If they agree to this, then the details of the patient and their physician will be forwarded to the scientist who will be made aware that this patient has been referred from the physician and any further clinical details should be obtained from them. It would be hoped that in any arising publication that acknowledgement would be given to the ISPAD Rare Diabetes Collection but there would be no other requirement for authorship or manuscript review.