نتائج البحث - "Kathryn R. Napier"

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دورية أكاديمية

A web-based, patient driven registry for Angelman syndrome: the global Angelman syndrome registry

المؤلفون: Kathryn R. Napier, Megan Tones, Chloe Simons, Helen Heussler, Adam A. Hunter, Meagan Cross, Matthew I. Bellgard

المصدر: Orphanet Journal of Rare Diseases, Vol 12, Iss 1, Pp 1-5 (2017)

مصطلحات موضوعية: Angelman syndrome, Disease registry, Global, Interoperable, Open source, Patient reported, Medicine

وصف الملف: electronic resource

Relation: http://link.springer.com/article/10.1186/s13023-017-0686-1; https://doaj.org/toc/1750-1172

URL الوصول: https://doaj.org/article/4a679c2409094688bd9ec7fb82d33f1d

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Design, development and deployment of a web-based patient registry for rare genetic lipid disorders

المؤلفون: Gerald F. Watts, Kathryn R. Napier, John R. Burnett, Amanda J. Hooper, Jing Pang, David M. Ng, Damon A. Bell, L. Render, Matthew I. Bellgard

المصدر: Pathology. 52(4)

URL الوصول: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::cdf197ad66e6100290ed8bf2bedb537b
https://pubmed.ncbi.nlm.nih.gov/32276786

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Research protocol: The initiation, design and establishment of the Global Angelman Syndrome Registry

المؤلفون: Matthew I. Bellgard, Honey Heussler, Adam Hunter, Megan Tones, Kathryn R. Napier, Chloe Simons, Meagan Cross

المصدر: Journal of Intellectual Disability Research. 62:431-443

URL الوصول: https://explore.openaire.eu/search/publication?articleId=doi_________::56154980155dbe8573a291817fa20a47
https://doi.org/10.1111/jir.12482

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Design of a framework for the deployment of collaborative independent rare disease-centric registries: Gaucher disease registry model

المؤلفون: Jack Goldblatt, Nikolajs Zeps, Matthew I. Bellgard, Alan H. Bittles, Jeff Szer, Kathryn R. Napier, Sue Fletcher, Adam Hunter

المصدر: Blood Cells, Molecules & Diseases

مصطلحات موضوعية: 0301 basic medicine, Post-market surveillance, Postmarketing surveillance, Disease, Information repository, DEs, data elements, ICGG, International Collaborative Gaucher Group, Article, Independent Rare Disease Registry, Orphan drug, 03 medical and health sciences, Disease registry, Rare Diseases, medicine, Rare Disease Registry Framework, Humans, Registries, Molecular Biology, GR, Gaucher registry, Internet, RML, Registry Mark-up Language, Gaucher Disease, business.industry, Cell Biology, Hematology, RDRF, Rare Disease Registry Framework, Open source, medicine.disease, 3. Good health, Clinical trial, Search Engine, API, application programming interface, 030104 developmental biology, Software deployment, Molecular Medicine, Medical emergency, IRDR, Independent Rare Disease Registries, Web-based, business, Software, Rare disease

URL الوصول: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::5c0d49e376509f88ef7480d1a3247d4f
http://europepmc.org/articles/PMC5729019

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A Web-Based Registry for Familial Hypercholesterolaemia

المؤلفون: Matthew I. Bellgard, Caroline E. Walker, Jing Pang, Kathryn R. Napier, Leanne Lamont, Hugh Dawkins, Gerald F. Watts, Adam Hunter, Frank M. van Bockxmeer

المصدر: Heart, Lung and Circulation. 26:635-639

URL الوصول: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::e2b6022f1de8980acc171c0f53e6b2ea
https://doi.org/10.1016/j.hlc.2016.10.019

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6

Design of the Familial Hypercholesterolaemia Australasia Network Registry: Creating Opportunities for Greater International Collaboration

المساهمون: Bellgard, Matthew I, Walker, Caroline E, Napier, Kathryn R, Lamont, Leanne, Hunter, Adam A, Render, Lee, Radochonski, Maciej, Pang, Jing, Pedrotti, Annette, Sullivan, David R, Kostner, Karam, Bishop, Warrick, George, Peter M, O'brien, Richard C, Clifton, Peter M, Van Bockxmeer, Frank M, Nicholls, Stephen J, Hamilton-Craig, Ian, Dawkins, Hugh JS, Watts, Gerald F

المصدر: Journal of Atherosclerosis and Thrombosis

مصطلحات موضوعية: Cost-Benefit Analysis, International Cooperation, Interoperability, Cardiology, Stakeholder engagement, Translational research, Familial hypercholesterolemia, 030204 cardiovascular system & hematology, Hyperlipoproteinemia Type II, 03 medical and health sciences, 0302 clinical medicine, Disease registry, interoperable, Blueprint, Interoperable, Internal Medicine, medicine, Humans, Registries, 030212 general & internal medicine, Program Development, Registry framework, Government, Australasia, Cost–benefit analysis, business.industry, Biochemistry (medical), Reproducibility of Results, Middle Aged, model of care, medicine.disease, Model of care, 3. Good health, registry framework, familial hypercholesterolaemia, disease registry, Other, Medical emergency, Familial hypercholesterolaemia, Cardiology and Cardiovascular Medicine, business