Coeliac New Zealand is delighted to partner with the Celiac Disease Foundation to set up a New Zealand Patient Registry on our website. https://coeliac.org.nz/patient-registry/

Who is the Celiac Disease Foundation?
The Celiac Disease Foundation, established in 1990, is a leading global patient advocacy organisation committed to accelerating diagnosis, treatments, and a cure for coeliac disease. Their mission is to improve the health and well-being of the millions of individuals around the world affected by this genetic autoimmune disease through their strategic investments in research, advocacy, and education. The iCureCeliac® patient registry and extensive recruitment services speeds up the identification of qualified patient candidates to advance critical disease research.

The Celiac Disease Foundation adheres to the highest scientific and ethical standards as they work to promote a greater understanding of coeliac disease and collaborate with partners around the world including here in Aotearoa to improve the outcomes for all people living with coeliac disease.

What is a Patient Registry?
A registry enables us to capture information from people living with coeliac disease in New Zealand for the first time.  This information can be used to find out who is living with the condition and specific demographic information about these individuals.Want to add your data to the New Zealand Patient Registry? You can do so now by clicking the link HERE.

Why is it important to be part of the registry?
Having a specific Patient Registry in New Zealand allows local researchers to better understand the rates of diagnosis and the effectiveness and adherence to the gluten-free diet. In addition, it will allow Coeliac New Zealand to give you information directly about clinical trials or studies that may be available in the future.

You will help researchers to

• Increase diagnosis rates of coeliac disease for the large proportion of New Zealanders who are unaware they have the condition.
• Help identify alternative treatments to the gluten-free diet
• Help identify long-term health impacts of coeliac disease
• Help clinical trial organisations potentially accelerate towards finding a cure for coeliac disease.

Research News

The registry portal also enables you to find out more about international research that is happening right now globally. Access recent posts about coeliac disease or search the archive of the Celiac Disease Foundation.

Do I have to be a member of Coeliac New Zealand to be on the registry?
The short answer is no but the big question is why you wouldn’t join an organisation that is advocating for you.

JOIN COELIAC NEW ZEALAND TODAY and pay only the annual subscription fee until the end of 2024.