Research

Coeliac disease has been recognised as an under researched and greatly underdiagnosed disease.

The Coeliac Society is keen to encourage research regarding coeliac disease, dermatitis herpetiformis, the gluten free diet and any associated conditions. We actively support and have representation on the Coeliac Research Fund Limited (CRF), formerly the Australian and New Zealand Coeliac Research Fund, which has been formed to work towards a cure and other ethical forms of treatment of coeliac disease.

The research fund has included education about coeliac disease within the medical profession as one of its major activities.

Kristine Ash, Executive Officer of the CRF wrote the following article for the September 2008 edition of The Australian Coeliac magazine –

Coeliac Research Fund sets its agenda

It is the impact of coeliac disease on the lives of so many that motivated me to undertake the newly created role of Executive Officer of The Coeliac Research Fund (CRF).

From the personal experience of a close family member who was diagnosed with the disease late in life, I know how valuable the information and support network has been when making significant dietary changes. Recently, I was discussing coeliac disease with Graham Price and his words will always ring in my ears, “All we want to do is eat normal bread”. This is such a seemingly simple wish - yet one that carries with it the, as yet, unmet hopes and aspirations of so many coeliac sufferers. Graham went on to explain that although diagnosis often comes with a sense of relief this can be followed by the sobering reality of a life-long gluten free diet. The prevalence of coeliac disease, 1 in 100 people, and the shocking statistic that 4 out of 5 cases go undiagnosed is incentive indeed to fulfill the tasks ahead.

The quiet determination and passion of Dr Bob Anderson for his research and his willingness to be a voice for the wider implications of the disease equally inspires me. Not only has Bob spent many years furthering coeliac disease research, but he has been instrumental in founding The Coeliac Research Fund. He profoundly understands that a holistic approach to the disease is necessary in order to build awareness, improve research outcomes and find a cure. Joining Bob on the Board of the CRF are Graham Price and Penny Dellsperger who will be familiar to regular readers of The Australian Coeliac magazine. They bring their dedication and knowledge to the Board and together we plan to effect change.

The Coeliac Research Fund’s vision is to cure, control and prevent coeliac disease. Resources and funding are limited therefore it is practical to set shorter-term goals, and a workable, day to day mission which will address the unmet medical, research and educational needs of coeliac disease.

In particular, CRF will support and focus on the following three key areas:

1. When coeliac disease is diagnosed, the CRF will:

• Support initiatives to find a cure for coeliac disease including research into vaccines, gene therapies and immune modifiers
• Work to improve current diet therapy, for example, supporting improved gluten detection tests for food, the development of supplements, improving monitoring of disease activity and work towards reducing the cost and lifestyle burden of managing the disease
• Work to ensure a better understanding and management of associated conditions and complications.  This is essential for the long-term health of those diagnosed with coeliac disease

2. To address the under-diagnosis of coeliac  disease, CRF will:

• Work with health professionals to increase awareness in order to reduce the number of un-diagnosed cases
• Improve upon current diagnostic and screening tests
• Facilitate a better definition of the prevalence and health burden of the disease in the community

3. To further advance the understanding of coeliac disease susceptibility, CRF will:

• Encourage the prediction of susceptibility through genetic testing since it is now clear that a genetic predisposition to the disease can be determined
• Support those working towards and understanding of how to prevent the disease

The strategic direction of CRF is now firmly in place and specific goals are soon to be finalised. These include the development of a branding for CRF along with a webpage, working jointly with The Coeliac Society to build awareness about the disease in the general community and to embark on a strategic fundraising program to raise funds to support comprehensive research and health education programs. Coeliac Awareness Week takes place during 13-20 March 2009 and I am looking forward to working with the many supporters of the week to develop a public relations campaign that builds on the successful programs of the last few years.
I also look forward to meeting many of you over the next few months, to discuss how The Coeliac Society and CRF can work collaboratively to impact on the future. A future that brings coeliac disease well and truly to the forefront of awareness, so it no longer goes un-diagnosed, so funding is available for pressing research, and those with coeliac disease can one day eat normal bread. Most of all, I look forward to being part of the vision - to cure, prevent and control coeliac disease.

Kristine Ash
Executive Officer
Coeliac Research Fund Limited