Brecon Registration and Consent forms

From January 2018 all units use 2018 General Data Protection Registration (GDPR) compliant printed Brecon Group Patient Information Leaflet (hard copies on request), Brecon Group Consent form, Brecon Group Registration form, and a Brecon Group Patient Assent form (this latter only to be used if required).  At diagnosis, every newly diagnosed person with diabetes under the age of 17 is given the printed Patient Information Leaflet and then the Consent form is fully completed, followed by the Registration form (English and Welsh versions of all are available); and both forms are scanned and emailed to the data administrator, hopefully within one month of diagnosis.  The original forms are kept in the patient’s notes.

Teams also complete the forms for new patients who have moved into Wales if they were originally diagnosed outside Wales.

In 2019 there were some agreed updates to the Brecon Group Consent form (see below) and, until we do another print run of the Brecon Group Patient Information Leaflet, from May 2019 we are fully GDPR compliant with the updated Brecon Group Consent Forms 2019 (English and Welsh), and with these amendment details available on the Brecon Group webpage:

  • A copy of the Leaflet Amendment (shown on website) is available at each unit to show (with the Patient Information Leaflet) to any inquiring parent.

Brecon Group Patient Information Leaflet – amendments

The following has been added to the 2019 Brecon Group Consent forms (English and Welsh), and will be referenced in the Brecon Group Patient Information Leaflet at the next re-print:

  • I understand that my personal data will be de-identified by an NHS organisation so that it can be used in anonymous form for further research in the public interest 
  • Rwy’n deall y bydd fy data personol yn cael ei dad-nodi an sefydliad y GIG fel y gellir ei ddefnyddio mewn ffurf anhysbys am ymchwil pellach er budd y cyhoedd 

Any future changes that might occur will be available on this webpage. Future Patient Information Leaflets will include the address of the Brecon Group webpage. The updated Patient Information Leaflet 2021 is found below.

Brecon Group Leaflets

Although we are not primarily collecting data on older young people, young people aged 16-18 with sufficient understanding are able to give their full consent to participate in research independently of their parents and guardians, in which case they should sign the Brecon Group Consent form.