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NORD, EURORDIS and CORD Release a Joint Declaration of 10 Key Principles for Rare Disease Patient Registries

November 14, 2012 - NORD, CORD, and EURORDIS have released a joint declaration on common principles regarding Rare Disease Patient Registries.

For the first time, on behalf of an estimated 60 million people living with rare diseases in Europe and North America, the National Organization for Rare Disorders (NORD), the European Organisation for Rare Diseases (EURORDIS) and the Canadian Organization for Rare Disorders (CORD) have released a joint declaration on common principles regarding Rare Disease Patient Registries.

"In 10 key points, NORD, EURORDIS, and CORD recognize that Rare Disease Patient Registries constitute key instruments for increasing knowledge on rare diseases, supporting fundamental clinical and epidemiological research, and post-marketing surveillance of orphan drugs and treatments used off-label," explains Anna Kole, Associate Director at NORD.  "Furthermore, and of great importance for patients and their families, they can be instrumental in supporting health and social services planning.  Rare Disease Patient Registries are powerful, cost-effective instruments to improve the overall quality of care, quality of life, and survival of patients."

NORD, EURORDIS, and CORD recognize that patient involvement is a key element in the successful establishment and long-term maintenance of RAre Disease Patient Registries and that many patient groups are already very active and capable in this role.

The document is significant in that it represents a common reflection and standpoint, on a significant global topic, from three of the most influential rare disease patient organizatons on both sides of the Atlantic.

"It is expected that these common reflections and principles will serve as a reference for global stakeholders when shaping policies and taking actions in the field of Rare Disease Patient Registries.  NORD is particularly motivated to reflect these principles in its Rare Diseae Patient Registry Program," says Peter L. Saltonstall, NORD President and CEO.

Read the Joint Declaration.

Read more about Rare Disease Patient Registries.

 
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