• Help people with EB

    Your support of DEBRA International or a national EB group enables us to provide the best quality of life for families and individuals affected by EB.

Donation Account: IBAN AT65 6000 0005 1004 5254, BIC BAWAATWW, DEBRA International, Am Heumarkt 27/1, 1030 Vienna

donate now

14.12.2016

Strengthening the Clinical Practice Guideline initiative


Strengthening the Clinical Practice Guideline initiative

DEBRA International, in collaboration with
EB-CLINET, is undertaking a long-term initiative to develop clinical practice guidelines for EB, in order to improve EB clinical care.

To support progression and expansion of the initiative, a scoping project was undertaken during the period February-July 2016, to assess the needs of the different guideline topics and to make recommendations for future steps. The project far exceeded its initial goals and, over its course, considerable steps were taken to progress and strengthen plans for many guidelines, in varied aspects of EB clinical care. See the full report.

The major recommendation of the scoping project is to employ an EB Guideline Coordinator (on a part-time basis) to facilitate translation of the goodwill and commitment of the many volunteers involved into actual results, in the form of EB clinical practice guidelines. We are delighted to announce that Dr. Kattya Mayre Chilton has been appointed to this position and will continue on the great work she undertook during the period of the scoping exercise. Kattya will work one day a week to support the guideline leaders and panels in their work to develop guidelines.

We are also delighted to announce that some new guidelines are to be initiated.
DEBRA UK will fund a guideline in podiatry, to be led by Tariq Khan and Mark O'Sullivan in the UK and DEBRA of America will fund a guideline in occupational therapy to be led by Jennifer Chan in the US. DEBRA Norway is funding the psychosocial guideline, to be led by Dr. Kattya Mayre Chilton in the UK. We continue in our efforts to identify funding and people with clinical expertise to support the project. Please get in touch if you would like to discuss further.

Dr Avril Kennan, Clinical Practice Guideline Project Lead, DEBRA Ireland

EB Clinical Practice Guideline report

DEBRA Norway presents a cheque for €50,000 to fund the Psychosocial guideline