Leer un blog de Anna Kole, Directora de Proyectos de Biobancos y Registros de EURORDIS, sobre la capacidad de los registros de pacientes
The Power of Patient RegistriesBy Anna Kole, Registry and Biobank Projects Manager, EURORDIS For the past decade, EURORDIS has actively advocated, educated and communicated on the power of patient registries to improve the overall quality of care, quality of life and survival of patients. Until recently, however, the collection of patient information resided primarily with clinical experts and drug development companies. But the recognition of patient registries as key determinants in accelerating research and drug development progress has propelled significant interest from patient organisations over the last decade. Today, patient-driven registry initiatives are increasing and EURORDISstands firmly behind this transforming role of patients as research participants to one as research partners. In parallel, an increased recognition and acceptance of patient-reported data has given rise to a large number of new companies, platforms and applications (e.g. OpenApp) facilitating collection of data directly from or by patients and patient groups. Patient-reported data now enhance conventional methods of observational research in rare diseases, achieving new heights in data collection. EURORDISregularly advises its constituents and other stakeholders in navigating this new space. At the forefront of this changing landscape, EURORDIS conducted an extensive consultation process including a survey of over 3,000 European patients. The main findings of this survey were that patients are driven to collect their data in registries – though also for the shaping of healthcare delivery. They are motivated to make the best of data collected, expect to be well informed about their participation, appreciate patient representation the governance of registry efforts and expect access to data alongside clinical researchers, healthcare professionals and health authorities. The participants of this specific survey understood and supported the added-value of a comprehensive European approach in the development, maintenance and sustainability rare disease patient registries – both in terms of a harmonised legal framework and publically funded infrastructure. Release of survey results came at a key moment as the European Commission announced its strategic objective to create a European Platform on Rare Diseases Registration providing common services and tools for the existing (and future) rare diseases registries in the European Union. EURORDIS is now well-equipped to ensure that the unified voice of European rare disease patients is represented. Supported by this evidence-base, EURORDIS also actively participates in several promising multi-stakeholder and multinational initiatives around patient data collection, such as IRDIRC, RD-Connect, PARENT Joint Action and WEB-RADR to ensure that the voice of European rare disease patients is represented and that ongoing efforts remain patient centered. Increased momentum and attention to rare disease patient registries is of course not limited to Europe. In fact, to best guide patients as well as all other stakeholders initiating patient registration and data collection EURORDIS drafted a Declarationjointly signed by NORD and CORD (US and Canadian rare disease umbrella patient groups) reflecting an international consensus on the importance of rare diseases patient registries as well as several key characteristics that ensure their outputs are in the best interest of patients. It is not by coincidence that new surges of data collection have quickly followed with legislative reflection and reform. Since the European Commission’s initial proposal for a comprehensive reform of the data protection rules, EURORDIS has been closely monitoring and advocating for a legislative product that while facilitating the greatly needed advancement of research (particularly for rare diseases) strikes a careful balance between innovation and patients’ rights for this particularly vulnerable population. | 
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