The future of neurological patient registries
نویسندگان
چکیده
2014 Patient registries represent an important platform across geographical areas that can provide critical epidemiological data and information on the effectiveness of therapies or devices within a given disease group. Neurological patient registries represent an exciting opportunity to directly impact patient care and clinical trial readiness. Neurological registries also aid in the formulation of investigator networks and support translational research pipelines enhancing collaboration and cost–effectiveness of clinical research. Registries collecting high-quality data with near complete to complete ascertainment have the ability to generate useful knowledge about diseases, which is more generalizable to larger disease populations.
منابع مشابه
Perspectives on neurological patient registries: a literature review and focus group study
BACKGROUND Patient registries represent a well-established methodology for prospective data collection with a wide array of applications for clinical research and health care administration. An examination and synthesis of registry stakeholder perspectives has not been previously reported in the literature. METHODS To inform the development of future neurological registries we examined stakeh...
متن کاملEvaluation of neurological patient registries.
in the number of national as well as international registries for a variety of neurological conditions, with corresponding increase in the amount of publications arising from these efforts [ref]. The registries were established for determining the natural history of a specific disease, the effectiveness of new treatments, the quality of care and/or other patient-related outcomes. The purpose of...
متن کاملPatient recruitment by neurological registries.
BACKGROUND Clinical registries capture patient information contingent upon successful recruitment and retention of patients who will consent to participation. To accomplish this requires the elements that affect patient recruitment. For example, failure to adequately engage physicians or other healthcare professionals can have as much impact on recruitment success as failure to adequately ident...
متن کاملEthical and legal considerations for Canadian registries.
that will impact the creation and operation of neurological disease registries in Canada. This document is not meant to provide legal or ethical advice. In order to ensure that applicable laws and organizational policies are adhered to in an appropriate manner, it is recommended that legal advisors and relevant organizational representatives be consulted. For registries to succeed, it is critic...
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Widespread adoption of electronic health records (EHRs) and expansion of patient registries present opportunities to improve patient care and population health and advance translational research. However, optimal integration of patient registries with EHR functions and aggregation of regional registries to support national or global analyses will require the use of standards. Currently, there a...
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