المؤلفون: C Nichols, ND Pace, E Nysetvold, K Cotter, CM Cutillo, A Tisdale

المصدر: Value in Health. 25:S611

مصطلحات موضوعية: Health Policy, Public Health, Environmental and Occupational Health

URL الوصول: https://explore.openaire.eu/search/publication?articleId=doi_________::c4f1e9f120afe7d6b1c71747e6d86bda
https://doi.org/10.1016/j.jval.2022.04.1702

المؤلفون: Wan KK, Davis D, Lee TN, Ford-Scheimer SL, Andreu AL, Bietrix F, Bryans J, Castro MT, Chiba N, Faupel-Badger JM, Haynes B, Hirasawa R, Morel CM, Souza TML, Morrow D, Munro T, Newman S, Ussi AE, Zorzal PB, Hall MD, Lo DC, Cutillo CM

المصدر: Nature reviews. Drug discovery [Nat Rev Drug Discov] 2022 Mar; Vol. 21 (3), pp. 165-166.

نوع المنشور: News; Research Support, Non-U.S. Gov't

بيانات الدورية: Publisher: Nature Pub. Group Country of Publication: England NLM ID: 101124171 Publication Model: Print Cited Medium: Internet ISSN: 1474-1784 (Electronic) Linking ISSN: 14741776 NLM ISO Abbreviation: Nat Rev Drug Discov Subsets: MEDLINE

مواضيع طبية MeSH: COVID-19*/epidemiology , COVID-19*/prevention & control , Civil Defense*/organization & administration , Civil Defense*/trends , Communicable Disease Control*/methods , Communicable Disease Control*/organization & administration , Communicable Disease Control*/trends , Translational Research, Biomedical*/methods , Translational Research, Biomedical*/standards , Translational Research, Biomedical*/trends, Communication Barriers ; Drug Development ; Forecasting ; Global Health/standards ; Global Health/trends ; Humans ; International Cooperation ; Public Health ; SARS-CoV-2

المؤلفون: Navarrete-Opazo AA; Advocate Aurora Health, Advocate Aurora Research Institute, Milwaukee, WI, USA., Singh M; Advocate Aurora Health, Advocate Aurora Research Institute, Milwaukee, WI, USA.; School of Dentistry, Marquette University, Milwaukee, WI, USA., Tisdale A; National Center for Advancing Translational Sciences, National Institutes of Health, Bethesda, MD, USA., Cutillo CM; National Center for Advancing Translational Sciences, National Institutes of Health, Bethesda, MD, USA., Garrison SR; Advocate Aurora Health, Advocate Aurora Research Institute, Milwaukee, WI, USA. sheldon.garrison@aah.org.

المصدر: Genetics in medicine : official journal of the American College of Medical Genetics [Genet Med] 2021 Nov; Vol. 23 (11), pp. 2194-2201. Date of Electronic Publication: 2021 Jun 28.

نوع المنشور: Journal Article

بيانات الدورية: Publisher: Elsevier Country of Publication: United States NLM ID: 9815831 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1530-0366 (Electronic) Linking ISSN: 10983600 NLM ISO Abbreviation: Genet Med Subsets: MEDLINE

مواضيع طبية MeSH: Hospitalization* , Rare Diseases*/diagnosis , Rare Diseases*/epidemiology , Rare Diseases*/genetics, Adult ; Child ; Health Care Costs ; Humans ; Length of Stay ; Patient Acceptance of Health Care ; United States

المؤلفون: Tisdale A; Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), Bethesda, MD, 20817, USA., Cutillo CM; NCATS NIH, Bethesda, MD, 20817, USA., Nathan R; Eversana Life Science Services, LLC, Chicago, IL, USA., Russo P; Eversana Life Science Services, LLC, Chicago, IL, USA.; Population Health Management Spring Hills MSO, Edison, NJ, 08817, USA., Laraway B; Oregon Health and Science University (OHSU), Portland, OR, 97239, USA., Haendel M; University of Colorado, Anschutz Medical Campus, Aurora, CO, 80045, USA., Nowak D; Sanford Health, Sioux Falls, SD, 57117, USA., Hasche C; Sanford Health, Sioux Falls, SD, 57117, USA., Chan CH; Sanford Research, Sioux Falls, SD, 57104, USA., Griese E; Sanford Research, Sioux Falls, SD, 57104, USA.; Sanford Health Plan, Sioux Falls, SD, 57103, USA., Dawkins H; School of Medicine, The University of Notre Dame Australia, Sydney, Australia., Shukla O; Eversana Life Science Services, LLC, Chicago, IL, USA., Pearce DA; Sanford Health, Sioux Falls, SD, 57117, USA.; Sanford Research, Sioux Falls, SD, 57104, USA.; Sanford School of Medicine, University of South Dakota, Sioux Falls, SD, 57105, USA., Rutter JL; NCATS NIH, Bethesda, MD, 20817, USA., Pariser AR; Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), Bethesda, MD, 20817, USA. anne.pariser@nih.gov.

المصدر: Orphanet journal of rare diseases [Orphanet J Rare Dis] 2021 Oct 22; Vol. 16 (1), pp. 429. Date of Electronic Publication: 2021 Oct 22.

نوع المنشور: Journal Article

بيانات الدورية: Publisher: BioMed Central Country of Publication: England NLM ID: 101266602 Publication Model: Electronic Cited Medium: Internet ISSN: 1750-1172 (Electronic) Linking ISSN: 17501172 NLM ISO Abbreviation: Orphanet J Rare Dis Subsets: MEDLINE

مواضيع طبية MeSH: Machine Learning* , Rare Diseases*, Costs and Cost Analysis ; Delivery of Health Care ; Humans ; Pilot Projects

المؤلفون: Cutillo CM; 1National Center for Advancing Translational Sciences, National Institutes of Health, Bethesda, MD USA., Sharma KR; 1National Center for Advancing Translational Sciences, National Institutes of Health, Bethesda, MD USA., Foschini L; 2Evidation Health Inc., San Mateo, CA USA., Kundu S; 3Department of Radiology, The Johns Hopkins Hospital, Baltimore, MD USA., Mackintosh M; 4University College London, London, UK.; 5Alan Turing Institute, London, UK., Mandl KD; 6Computational Health Informatics Program, Boston Children's Hospital, Boston, MA USA.; 7Departments of Pediatrics and Biomedical Informatics, Harvard Medical School, Boston, MA USA.

مؤلفون مشاركون: MI in Healthcare Workshop Working Group

المصدر: NPJ digital medicine [NPJ Digit Med] 2020 Mar 26; Vol. 3, pp. 47. Date of Electronic Publication: 2020 Mar 26 (Print Publication: 2020).

نوع المنشور: Journal Article

بيانات الدورية: Publisher: Nature Publishing Group Country of Publication: England NLM ID: 101731738 Publication Model: eCollection Cited Medium: Internet ISSN: 2398-6352 (Electronic) Linking ISSN: 23986352 NLM ISO Abbreviation: NPJ Digit Med Subsets: PubMed not MEDLINE

المؤلفون: Boycott KM; Children's Hospital Eastern Ontario Research Institute, University of Ottawa, Ottawa, ON, Canada., Lau LP; IRDiRC Scientific Secretariat, Paris, France.; National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), Bethesda, MD, USA., Cutillo CM; National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), Bethesda, MD, USA., Austin CP; National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), Bethesda, MD, USA.

المصدر: EMBO molecular medicine [EMBO Mol Med] 2019 May; Vol. 11 (5).

نوع المنشور: Journal Article

بيانات الدورية: Publisher: EMBO Press Country of Publication: England NLM ID: 101487380 Publication Model: Print Cited Medium: Internet ISSN: 1757-4684 (Electronic) Linking ISSN: 17574676 NLM ISO Abbreviation: EMBO Mol Med Subsets: MEDLINE

مواضيع طبية MeSH: International Cooperation*, Rare Diseases/*diagnosis , Rare Diseases/*therapy, Humans ; Information Dissemination ; Inventions ; Knowledge ; Orphan Drug Production ; Rare Diseases/economics ; Research Support as Topic/economics ; Social Control, Formal ; Stakeholder Participation

المؤلفون: Austin CP; National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), Bethesda, Maryland, USA., Cutillo CM; National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), Bethesda, Maryland, USA., Lau LPL; IRDiRC Scientific Secretariat, Inserm-US14, Rare Diseases Platform, Paris, France., Jonker AH; IRDiRC Scientific Secretariat, Inserm-US14, Rare Diseases Platform, Paris, France., Rath A; IRDiRC Scientific Secretariat, Inserm-US14, Rare Diseases Platform, Paris, France.; Orphanet, Inserm-US14, Rare Diseases Platform, Paris, France., Julkowska D; Agence Nationale de la Recherche (ANR), Paris, France., Thomson D; Shire, Lexington, Massachusetts, USA, (until April 2017)., Terry SF; Genetic Alliance, Washington DC, USA., de Montleau B; EURORDIS-Rare Diseases Europe, Paris, France., Ardigò D; Corporate Drug Development, Chiesi Farmaceutici S.p.A., Italy., Hivert V; EURORDIS-Rare Diseases Europe, Paris, France., Boycott KM; Children's Hospital of Eastern Ontario Research Institute, University of Ottawa, Ottawa, Canada., Baynam G; Genetic Services of Western Australia, King Edward Memorial Hospital, Perth, Australia.; Western Australian Register of Developmental Anomalies, Perth, Australia., Kaufmann P; National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), Bethesda, Maryland, USA., Taruscio D; National Centre for Rare Diseases, Istituto Superiore di Sanità, Rome, Italy., Lochmüller H; Institute of Genetic Medicine, Newcastle University, Newcastle upon Tyne, UK., Suematsu M; Japan Agency for Medical Research and Development (AMED), Tokyo, Japan., Incerti C; Sanofi Genzyme, Cambridge, Massachusetts, USA., Draghia-Akli R; Directorate General for Research and Innovation (DG RTD), European Commission, Brussels, Belgium, (until April 2017).; Merck & Co. Inc., Upper Gwynedd, Pennsylvania, USA, (from June 2017)., Norstedt I; Directorate General for Research and Innovation (DG RTD), European Commission, Brussels, Belgium, (until April 2017)., Wang L; National Human Genome Research Institute (NHGRI), National Institutes of Health (NIH), Bethesda, Maryland, USA., Dawkins HJS; Office of Population Health Genomics, Public Health Division, Department of Health, Government of Western Australia, Perth, Australia.

مؤلفون مشاركون: International Rare Diseases Research Consortium (IRDiRC)

المصدر: Clinical and translational science [Clin Transl Sci] 2018 Jan; Vol. 11 (1), pp. 21-27. Date of Electronic Publication: 2017 Oct 23.

نوع المنشور: Historical Article; Journal Article; Research Support, Non-U.S. Gov't; Review

بيانات الدورية: Publisher: WileyBlackwell Pub Country of Publication: United States NLM ID: 101474067 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1752-8062 (Electronic) Linking ISSN: 17528054 NLM ISO Abbreviation: Clin Transl Sci Subsets: MEDLINE

مواضيع طبية MeSH: International Cooperation* , Intersectoral Collaboration*, Patient Participation/*trends , Rare Diseases/*diagnosis , Translational Research, Biomedical/*trends, Access to Information ; Goals ; Health Services Accessibility/organization & administration ; Health Services Accessibility/trends ; History, 21st Century ; Humans ; Information Dissemination ; Prevalence ; Rare Diseases/epidemiology ; Rare Diseases/etiology ; Rare Diseases/therapy ; Registries ; Translational Research, Biomedical/economics ; Translational Research, Biomedical/history ; Translational Research, Biomedical/organization & administration

المؤلفون: Dawkins HJS; Office of Population Health Genomics, Public Health Division, Department of Health, Government of Western Australia, Perth, Australia., Draghia-Akli R; Directorate General for Research and Innovation (DG RTD), European Commission, Brussels, Belgium, (until April 2017).; Merck & Co. Inc., Upper Gwynedd, Pennsylvania, USA, (from June 2017)., Lasko P; Department of Biology, McGill University, Montréal, Canada., Lau LPL; IRDiRC Scientific Secretariat, Inserm-US14, Rare Diseases Platform, Paris, France., Jonker AH; IRDiRC Scientific Secretariat, Inserm-US14, Rare Diseases Platform, Paris, France., Cutillo CM; National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), Bethesda, Maryland, USA., Rath A; IRDiRC Scientific Secretariat, Inserm-US14, Rare Diseases Platform, Paris, France.; Orphanet, Inserm-US14, Rare Diseases Platform, Paris, France., Boycott KM; Children's Hospital of Eastern Ontario Research Institute, University of Ottawa, Ottawa, Canada., Baynam G; Genetic Services of Western Australia, King Edward Memorial Hospital, Perth, Australia.; Western Australian Register of Developmental Anomalies, Perth, Australia., Lochmüller H; Institute of Genetic Medicine, Newcastle University, Newcastle upon Tyne, UK., Kaufmann P; National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), Bethesda, Maryland, USA., Le Cam Y; EURORDIS-Rare Diseases Europe, Paris, France., Hivert V; EURORDIS-Rare Diseases Europe, Paris, France., Austin CP; National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), Bethesda, Maryland, USA.

مؤلفون مشاركون: International Rare Diseases Research Consortium (IRDiRC)

المصدر: Clinical and translational science [Clin Transl Sci] 2018 Jan; Vol. 11 (1), pp. 11-20. Date of Electronic Publication: 2017 Oct 23.

نوع المنشور: Historical Article; Journal Article; Research Support, Non-U.S. Gov't; Review

بيانات الدورية: Publisher: WileyBlackwell Pub Country of Publication: United States NLM ID: 101474067 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1752-8062 (Electronic) Linking ISSN: 17528054 NLM ISO Abbreviation: Clin Transl Sci Subsets: MEDLINE

مواضيع طبية MeSH: Intersectoral Collaboration*, Advisory Committees/*organization & administration , International Cooperation/*history , Rare Diseases/*therapy , Translational Research, Biomedical/*organization & administration, Advisory Committees/history ; Advisory Committees/standards ; Clinical Trials as Topic ; Guidelines as Topic ; History, 21st Century ; Humans ; Prevalence ; Rare Diseases/diagnosis ; Rare Diseases/epidemiology ; Rare Diseases/etiology ; Translational Research, Biomedical/economics ; Translational Research, Biomedical/history ; Translational Research, Biomedical/standards

المؤلفون: Julkowska D; Department of Health &Biology, Agence Nationale de la Recherche, Paris, France., Austin CP; National Center for Advancing Translational Sciences (NCATS), US National Institutes of Health (NIH), Bethesda, MD, USA., Cutillo CM; National Center for Advancing Translational Sciences (NCATS), US National Institutes of Health (NIH), Bethesda, MD, USA., Gancberg D; Directorate Health, Directorate-General for Research and Innovation, European Commission, Brussels, Belgium., Hager C; Directorate Health Systems, Medical products and innovation, Directorate-General for Health and Food Safety, European Commission, Brussels, Belgium., Halftermeyer J; Department of Health &Biology, Agence Nationale de la Recherche, Paris, France., Jonker AH; IRDiRC Scientific Secretariat, Inserm US14, Paris, France., Lau LPL; IRDiRC Scientific Secretariat, Inserm US14, Paris, France., Norstedt I; Directorate Health, Directorate-General for Research and Innovation, European Commission, Brussels, Belgium., Rath A; Inserm US14-Orphanet, Paris, France., Schuster R; DLR Project Management Agency, Health, Bonn, Germany., Simelyte E; Directorate Health, Directorate-General for Research and Innovation, European Commission, Brussels, Belgium., van Weely S; The Netherlands Organisation for Health Research and Development (ZonMw), The Hague, The Netherlands.

المصدر: Gene therapy [Gene Ther] 2017 Sep; Vol. 24 (9), pp. 562-571. Date of Electronic Publication: 2017 Jul 27.

نوع المنشور: Journal Article; Review; Research Support, Non-U.S. Gov't

بيانات الدورية: Publisher: Nature Publishing Group Country of Publication: England NLM ID: 9421525 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1476-5462 (Electronic) Linking ISSN: 09697128 NLM ISO Abbreviation: Gene Ther Subsets: MEDLINE

مواضيع طبية MeSH: International Cooperation*, Biomedical Research/*organization & administration , Rare Diseases/*therapy, Biomedical Research/economics ; European Union ; Humans ; Rare Diseases/diagnosis

المؤلفون: Cutillo CM; Health Science Policy Analyst, National Center for Advancing Translational Sciences, 6701 Democracy Blvd Rm 988, Bethesda, MD, 20817, USA. cutilloc@mail.nih.gov., Austin CP; National Center for Advancing Translational Sciences, National Institutes of Health, Bethesda, MD, 20892-1851, USA., Groft SC; National Center for Advancing Translational Sciences, National Institutes of Health, Bethesda, MD, 20892-1851, USA.

المصدر: Advances in experimental medicine and biology [Adv Exp Med Biol] 2017; Vol. 1031, pp. 349-369.

نوع المنشور: Journal Article

بيانات الدورية: Publisher: Kluwer Academic/Plenum Publishers Country of Publication: United States NLM ID: 0121103 Publication Model: Print Cited Medium: Print ISSN: 0065-2598 (Print) Linking ISSN: 00652598 NLM ISO Abbreviation: Adv Exp Med Biol Subsets: MEDLINE

مواضيع طبية MeSH: Global Health* , International Cooperation* , Orphan Drug Production*, Biomedical Research/*methods , Rare Diseases/*drug therapy, Humans ; Program Development ; Rare Diseases/diagnosis ; Rare Diseases/epidemiology ; Research Design