Eurordis - Rare Disease Europe

EURORDIS-NORD-CORD release a Joint Declaration of 10 Key Principles for 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 European Organisation for Rare Diseases (EURORDIS), the National Organization for Rare Disorders (NORD) 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, EURORDIS, NORD and CORD recognise 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. 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” explains Monica Ensini, EURORDIS Scientific Director.

EURORDIS, NORD and CORD also recognise 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 important in that it represents a common reflection and standpoint, on a significant global topic, from three of the most influential rare disease patient organisations on both sides of the Atlantic. It is expected that these common reflections and principles will serve as a reference to all other stakeholders when shaping policies and taking actions in the field of Rare Disease Patient Registries particularly in the EUCERD, national plans and IRDiRC” declares Yann Le Cam , EURORDIS Chief Executive Officer.