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Presentations include: Rare disease research, patient registries, and biospecimens: A translational scientist’s perspectives on mitochondrial disease Dr. Marni J. Falk. Assistant Professor of Pediatrics Division of Human Genetics The Children's Hospital of Philadelphia “Unlocking the unstructured information in EHRs: the role of natural language processing technology in integrating patient clinical information” Dr. Philip Resnik, Professor at the Department of Linguistics and Institute for Advanced Computer Studies, University of Maryland College Park and “Ethical issues and challenges surrounding research in rare diseases: informed consent, privacy, data sharing, and return of results” Dr. Rachel Dvoskin Genetics Research Analyst, Genetics and Public Policy Center Johns Hopkins Berman Institute of Bioethics
Rare diseases : the challenges presented by biospecimens, patient registries, electronic heath record, and bioethics [electronic resource] / Marni J. Falk, Philip Resnik, and Rachel Dvoskin ; Biospecimens Interest Group.
Author:
Falk, Marni J. National Institutes of Health (U.S.). Biospecimen Interest Group.
Publisher:
[Bethesda, Md. : National Institutes of Health, 2012]
Abstract:
(CIT): Presentations include: Rare disease research, patient registries, and biospecimens: A translational scientist"s perspectives on mitochondrial disease Dr. Marni J. Falk. Assistant Professor of Pediatrics Division of Human Genetics The Children's Hospital of Philadelphia "Unlocking the unstructured information in EHRs: the role of natural language processing technology in integrating patient clinical information" Dr. Philip Resnik, Professor at the Department of Linguistics and Institute for Advanced Computer Studies, University of Maryland College Park and "Ethical issues and challenges surrounding research in rare diseases: informed consent, privacy, data sharing, and return of results" Dr. Rachel Dvoskin Genetics Research Analyst, Genetics and Public Policy Center Johns Hopkins Berman Institute of Bioethics For more information, visit http://biospecimens.ordr.info.nih.gov.
Subjects:
Bioethical Issues Electronic Health Records Mitochondrial Diseases Rare Diseases Registries Specimen Handling
