Výsledky vyhľadávania - "Patient registries"

The implementation of a standardized paper-based chronic noncommunicable diseases registry at primary health-care clinics

Autori: Kavita Dharamraj Vedwattie Birju-Balraj

Zdroj: International Journal of Noncommunicable Diseases, Vol 9, Iss 3, Pp 120-125 (2024)

Predmety: primary care, RC581-951, Specialties of internal medicine, chronic noncommunicable diseases, paper-based patient registries, developing countries, implementation, population-based patient registries

Prístupová URL adresa: https://doaj.org/article/fc6d72566d9846e99917e2550f1ca61e

Big Multiple Sclerosis Data network: an international registry research network

Autori: Glaser, Anna Butzkueven, Helmut van der Walt, Anneke a ďalší

Prispievatelia: Glaser, Anna Butzkueven, Helmut van der Walt, Anneke a ďalší

Zdroj: J Neurol

Predmety: Real-world evidence, Big Data, Multiple Sclerosis, Information Dissemination, International Cooperation, Patient registries, 3. Good health, Multiple sclerosis, Short Commentary, 03 medical and health sciences, 0302 clinical medicine, Humans, Multiple sclerosi, Patient registrie, Multiple sclerosis, Patient data network, Patient registries, Real-world evidence, Registries, Patient data network

Popis súboru: application/pdf; STAMPA

Prístupová URL adresa: https://pubmed.ncbi.nlm.nih.gov/38561543
https://hdl.handle.net/11365/1266299
https://doi.org/10.1007/s00415-024-12303-6
https://link.springer.com/article/10.1007/s00415-024-12303-6

Data accuracy, consistency and completeness of the national Swiss cystic fibrosis patient registry: Lessons from an ECFSPR data quality project

Autori: Lara Wolf Jakob Usemann Eugénie Collaud a ďalší

Prispievatelia: Lara Wolf Jakob Usemann Eugénie Collaud a ďalší

Zdroj: Journal of cystic fibrosis, vol. 23, no. 3, pp. 506-511
Wolf, Lara; Usemann, Jakob; Collaud, Eugénie; Derkenne, Marie-France; Fischer, Reta; Hensen, Maxime; Hitzler, Michael; Hofer, Markus; Inci, Demet; Irani, Sarosh; Jahn, Kathleen; Koutsokera, Angela; Kusche, Rachel; Kurowski, Thomas; Latzin, Philipp; Lin, Dagmar; Mioranza, Laurence; Moeller, Alexander; Mornand, Anne; Mueller-Suter, Dominik; ... (2024). Data accuracy, consistency and completeness of the national Swiss cystic fibrosis patient registry: Lessons from an ECFSPR data quality project. Journal of cystic fibrosis, 23(3), pp. 506-511. Elsevier 10.1016/j.jcf.2023.08.015 <http://dx.doi.org/10.1016/j.jcf.2023.08.015>

Predmety: Pulmonary and Respiratory Medicine, Male, Adult, Cystic Fibrosis, Adolescent, Patient registries, 610 Medicine & health, Pediatrics, Cystic Fibrosis/epidemiology, Humans, Registries/statistics & numerical data, Switzerland/epidemiology, Data Accuracy, Child, Female, Reproducibility of Results, Cystic fibrosis, Data quality, Data quality audit, 2735 Pediatrics, Perinatology and Child Health, Registries, Perinatology and Child Health, 3. Good health, 2740 Pulmonary and Respiratory Medicine, 10178 Clinic for Pneumology, Switzerland

Popis súboru: application/pdf; 1_s2.0_S1569199323009049_main.pdf - application/pdf

Prístupová URL adresa: https://pubmed.ncbi.nlm.nih.gov/37996316
https://serval.unil.ch/notice/serval:BIB_C948FE31CEA8
https://serval.unil.ch/resource/serval:BIB_C948FE31CEA8.P001/REF.pdf
http://nbn-resolving.org/urn/resolver.pl?urn=urn:nbn:ch:serval-BIB_C948FE31CEA87
https://boris.unibe.ch/189340/

Ethics practices associated with reusing health data: an assessment of patient registries

Autori: Olmo R. van den Akker Susanne Stark Daniel Strech

Zdroj: BMC Medicine, Vol 22, Iss 1, Pp 1-10 (2024)

Predmety: Health data, Secondary use, Patient registries, Governance, Conflicts of interest, Informed consent, Medicine

Popis súboru: electronic resource

Relation: https://doaj.org/toc/1741-7015

Prístupová URL adresa: https://doaj.org/article/0caa5a70b680420abe07694324b0ce3f

A Systematic Literature Review to Identify Patient Registries in Portugal

Autori: Hugo Pedrosa Fábio Pereira Magda Carrilho a ďalší

Zdroj: Port J Public Health
Portuguese Journal of Public Health, Vol 41, Iss 2, Pp 132-139 (2023)
Portuguese Journal of Public Health v.41 n.2 2023

Predmety: Real-world evidence, Portugal, real-world data, registos de doentes, Patient registries, dados do mundo real, patient registries, portugal, Real-world data, 3. Good health, evidências do mundo real, Public aspects of medicine, RA1-1270, real-world evidence, Research Article

Popis súboru: text/html

Prístupová URL adresa: https://pubmed.ncbi.nlm.nih.gov/39469655
https://doaj.org/article/879e1cd224c34b8aaf381e0ab337a155
http://scielo.pt/scielo.php?script=sci_arttext&pid=S2504-31452023000200132

Overcoming denominator problems in refugee settings with fragmented electronic records for health and immigration data: a prediction-based approach

Autori: Stella Erdmann Rosa Jahn Sven Rohleder a ďalší

Zdroj: BMC Medical Research Methodology, Vol 24, Iss 1, Pp 1-14 (2024)

Predmety: Asylum seekers, Refugees, Prediction, Generalized linear models, Disease prevalence, Patient-registries, Medicine (General), R5-920

Popis súboru: electronic resource

Relation: https://doaj.org/toc/1471-2288

Prístupová URL adresa: https://doaj.org/article/d179f5a0b09b43c68d12b5806e7bb497

Research towards a healthier Ireland. Health Research Charities Ireland Position Paper 2019

Autori: Health Research Charities Ireland, Health Research Charities Ireland

Prispievatelia: Health Research Charities Ireland, Health Research Charities Ireland

Predmety: Patient and public involvement, Patient registries, genomics, Public policy advocacy, Health research policy, Public Information, Clinical research

Popis súboru: application/pdf

Prístupová URL adresa: http://hdl.handle.net/10147/643209

Teamwork makes the dream work: functional collaborations between families, scientists, and healthcare providers to drive progress in the treatment of Leigh Syndrome

Autori: Jesse D. Moreira Karan K. Smith Sophia Zilber a ďalší

Zdroj: Orphanet Journal of Rare Diseases, Vol 18, Iss 1, Pp 1-6 (2023)

Predmety: Leigh syndrome, Mitochondria, Mitochondrial genetics, Mitochondrial disease, Community, Patient registries, Medicine

Popis súboru: electronic resource

Relation: https://doaj.org/toc/1750-1172

Prístupová URL adresa: https://doaj.org/article/1e67ced0bac841229cdd5852cf7d0950

Unlocking the potential of patient registries: a guide for success

Autori: Health Research Charities Ireland NISR Cystic Fibrosis Registry of Ireland a ďalší

Prispievatelia: Health Research Charities Ireland NISR Cystic Fibrosis Registry of Ireland a ďalší

Predmety: Patient registries, HEALTH RESEARCH

Popis súboru: application/pdf

Prístupová URL adresa: http://hdl.handle.net/10147/642858

Developing a patient registry: a practical guide

Autori: Gardner, Michelle Jackson, Abaigeal Medical Research Charities Group, Cystic Fibrosis Registry of Ireland

Prispievatelia: Gardner, Michelle Jackson, Abaigeal Medical Research Charities Group, Cystic Fibrosis Registry of Ireland

Predmety: Patient registries, HEALTH RESEARCH

Popis súboru: application/pdf

Prístupová URL adresa: http://hdl.handle.net/10147/642853

Building national patient registries in Mexico: insights from the MexOMICS Consortium

Autori: Paula Reyes-Pérez Ana Laura Hernández-Ledesma Talía V. Román-López a ďalší

Zdroj: Frontiers in Digital Health, Vol 6 (2024)

Predmety: patient registries, genetics, twins, systemic lupus erythematosus, Parkinson Disease, Medicine, Public aspects of medicine, RA1-1270, Electronic computers. Computer science, QA75.5-76.95

Popis súboru: electronic resource

Relation: https://www.frontiersin.org/articles/10.3389/fdgth.2024.1344103/full; https://doaj.org/toc/2673-253X

Prístupová URL adresa: https://doaj.org/article/bd36fd104860458697641e7329541540

Houston Methodist cardiovascular learning health system (CVD-LHS) registry: Methods for development and implementation of an automated electronic medical record-based registry using an informatics framework approach

Autori: Khurram Nasir Rakesh Gullapelli Juan C Nicolas a ďalší

Zdroj: American Journal of Preventive Cardiology, Vol 18, Iss , Pp 100678- (2024)

Predmety: Patient registries, Population health, Cardiovascular research, Electronic medical records, Health outcomes-process assessment, Information retrieval-warehousing, Diseases of the circulatory (Cardiovascular) system, RC666-701, Public aspects of medicine, RA1-1270

Popis súboru: electronic resource

Relation: http://www.sciencedirect.com/science/article/pii/S2666667724000461; https://doaj.org/toc/2666-6677

Prístupová URL adresa: https://doaj.org/article/52f2762752f44e1995697592f174f14e

Anforderung an die Daten für die Target-Trial-Emulation: Eine Diskussion unter Betrachtung von Patientenregistern

Autori: Mathes, T

Zdroj: GMS Medizinische Informatik, Biometrie und Epidemiologie, Vol 20, p Doc03 (2024)
GMS Medizinische Informatik, Biometrie und Epidemiologie; VOL: 20; DOC03 /20240105/

Predmety: target trial, real-world data, routine practice data collection, Computer applications to medicine. Medical informatics, R858-859.7, Target-Trial, patient registries, Infectious and parasitic diseases, RC109-216, anwendungsbegleitende Datenerhebung, propensity scores, Kausalschluss, ddc: 610, Propensity Scores, Patientenregister, causal inference, versorgungsnahe Daten

Prístupová URL adresa: https://doaj.org/article/99bc3e120c914fdc86134e7292b04907

Building National Patient Registries in Mexico: Insights from the MexOMICS Consortium

Autori: Paula Reyes-Pérez Ana Laura Hernández-Ledesma Talía V. Román-López a ďalší

Zdroj: Front Digit Health
Frontiers in Digital Health, Vol 6 (2024)

Predmety: Promotion and Disease Reduction in Cardiovascular Health, FOS: Computer and information sciences, Family medicine, Bioinformatics, Health, Toxicology and Mutagenesis, Population, Omics, Cognition, systemic lupus erythematosus, Biochemistry, Genetics and Molecular Biology, Health Sciences, Genetics, genetics, Biology, Biobank, Psychiatry, The Exposome in Environmental Health Research, Life Sciences, Parkinson Disease, patient registries, twins, QA75.5-76.95, 16. Peace & justice, 3. Good health, Genomic Studies and Association Analyses, Environmental health, Electronic computers. Computer science, FOS: Biological sciences, Environmental Science, Physical Sciences, Digital Health, Medicine, Public aspects of medicine, RA1-1270, Cardiology and Cardiovascular Medicine, Psychosocial

Prístupová URL adresa: https://pubmed.ncbi.nlm.nih.gov/38895515
https://doaj.org/article/bd36fd104860458697641e7329541540

What can a national patient registry tell us about psychiatric disorders and reasons for referral to outpatient services in youth with hearing loss?

Autori: Beate Øhre Beate Oerbeck Pål Zeiner a ďalší

Zdroj: Nordic Journal of Psychiatry

Predmety: Psychiatry, Male, Adolescent, Deafness, International disease classifications, 3. Good health, 03 medical and health sciences, 0302 clinical medicine, Attention Deficit Disorder with Hyperactivity, Referral symptoms, National patient registries, Ambulatory Care, Humans, Female, Registries, Child, Hearing Loss, 10. No inequality, Referral and Consultation

Popis súboru: application/pdf

Prístupová URL adresa: https://www.tandfonline.com/doi/pdf/10.1080/08039488.2021.1979095?needAccess=true
https://pubmed.ncbi.nlm.nih.gov/34612158
https://www.ncbi.nlm.nih.gov/pubmed/34612158
https://pubmed.ncbi.nlm.nih.gov/34612158/
http://hdl.handle.net/10852/90024
https://doi.org/10.1080/08039488.2021.1979095
https://hdl.handle.net/11250/2980093

Development of a patient-centered core domain set for prospective observational longitudinal outcome studies in rheumatoid arthritis: an OMERACT initiative: an OMERACT initiative

Autori: Bruera S. Carmona L. Lopez-Olivo M. A. a ďalší

Zdroj: Bruera, S, Carmona, L, Lopez-Olivo, M A, Westrich-Robertson, T, March, L, Negron, J B, Christensen, R, Strand, V, Ingegnoli, F, Goel, N, Shea, B, Tugwell, P, Leong, A, Bingham, C O, Hill, C L & Suarez-Almazor, M E 2021, ' Development of a patient-centered core domain set for prospective observational longitudinal outcome studies in rheumatoid arthritis : an OMERACT initiative ', Seminars in Arthritis and Rheumatism, vol. 51, no. 5, pp. 1113-1116 . https://doi.org/10.1016/j.semarthrit.2021.08.003

Predmety: rheumatoid arthritis, cohort studies, observational studies, OMERACT, patient registries, patient-centered outcomes, Consensus, 3. Good health, Arthritis, Rheumatoid, 03 medical and health sciences, 0302 clinical medicine, Patient-Centered Care, Outcome Assessment, Health Care, Humans, Prospective Studies

Popis súboru: application/pdf

Prístupová URL adresa: https://pubmed.ncbi.nlm.nih.gov/34446270
https://portal.findresearcher.sdu.dk/en/publications/development-of-a-patient-centered-core-domain-set-for-prospective
https://www.sciencedirect.com/science/article/pii/S004901722100158X
https://jhu.pure.elsevier.com/en/publications/development-of-a-patient-centered-core-domain-set-for-prospective
https://mdanderson.elsevierpure.com/en/publications/development-of-a-patient-centered-core-domain-set-for-prospective
https://pubmed.ncbi.nlm.nih.gov/34446270/
https://portal.findresearcher.sdu.dk/da/publications/ab8d49c7-3590-44ee-9ae7-1ef028a03e6b
https://doi.org/10.1016/j.semarthrit.2021.08.003
https://portal.findresearcher.sdu.dk/da/publications/ab8d49c7-3590-44ee-9ae7-1ef028a03e6b

Electronic health records and patient registries in medical oncology departments in Spain

Autori: N. Ribelles I. Alvarez-Lopez A. Arcusa a ďalší

Prispievatelia: N. Ribelles I. Alvarez-Lopez A. Arcusa a ďalší

Zdroj: Clin Transl Oncol
Clinical & Translational Oncology
r-IIB SANT PAU. Repositorio Institucional de Producción Científica del Instituto de Investigación Biomédica Sant Pau
instname
Repisalud
Instituto de Salud Carlos III (ISCIII)
Dipòsit Digital de Documents de la UAB
Universitat Autònoma de Barcelona
Institut d’Investigació Biomèdica Sant Pau (IIB Sant Pau)

Predmety: Physician-Patient Relations, Medical oncology, Attitude of Health Personnel, Patient registries, 1. No poverty, Workload, Clinical practice, Medical Oncology, Work organization, Clinical research, 3. Good health, Electronic Prescribing, 03 medical and health sciences, Cross-Sectional Studies, 0302 clinical medicine, Spain, Oncology Service, Hospital, Surveys and Questionnaires, Electronic health records, Electronic Health Records, Humans, Registries, Research Article, Quality of Health Care

Popis súboru: application/pdf

Prístupová URL adresa: https://link.springer.com/content/pdf/10.1007/s12094-021-02614-9.pdf
https://pubmed.ncbi.nlm.nih.gov/33864619
https://iibsantpau.fundanetsuite.com/Publicaciones/ProdCientif/PublicacionFrw.aspx?id=4801
http://hdl.handle.net/20.500.12105/18314
https://dialnet.unirioja.es/servlet/articulo?codigo=8062068
https://link.springer.com/article/10.1007/s12094-021-02614-9
https://ddd.uab.cat/pub/artpub/2021/pmc_33864619/pmc_33864619.pdf
https://paperity.org/p/261239081/electronic-health-records-and-patient-registries-in-medical-oncology-departments-in-spain
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8390424
https://ddd.uab.cat/record/249565?ln=en
https://hdl.handle.net/10668/17593
https://hdl.handle.net/20.500.12105/18314

Hellenic registry of patients with home mechanical ventilation (HR-HMV): profiling sleep Apnea–Hypopnea syndrome patients across Greece

Autori: Vlasios K. Dimitriadis Christina Alexopoulou Anastasia Amfilochiou a ďalší

Zdroj: BMC Medical Informatics and Decision Making, Vol 22, Iss 1, Pp 1-13 (2022)

Predmety: Patient registries, Home mechanical ventilation, Chronic respiratory failure, Sleep Apnea–Hypopnea syndrome (SAHS), Computer applications to medicine. Medical informatics, R858-859.7

Popis súboru: electronic resource

Relation: https://doaj.org/toc/1472-6947

Prístupová URL adresa: https://doaj.org/article/bc3e6dd057254eea9660fe2637aee7bc

A Resource for Guiding Data Stewards to Make European Rare Disease Patient Registries FAIR

Autori: van Damme, Philip Moreno, Pablo Alarcón Bernabé, César H. a ďalší

Prispievatelia: van Damme, Philip Moreno, Pablo Alarcón Bernabé, César H. a ďalší

Zdroj: Digital.CSIC. Repositorio Institucional del CSIC
Consejo Superior de Investigaciones Científicas (CSIC)
Data Science Journal, Vol 22, Pp 12-12 (2023)
Data Science Journal; Vol. 22 (2023); 12

Predmety: FAIR data, Science (General), FAIR data stewardship, Patient registries, rare diseases, Data management planning, patient registries, 3. Good health, fair data, Rare diseases, European Reference Networks, Q1-390, european reference networks, fair data stewardship, data management planning

Popis súboru: application/pdf; text/xml

Prístupová URL adresa: http://hdl.handle.net/10261/331435
https://api.elsevier.com/content/abstract/scopus_id/85164259134
https://doaj.org/article/bf3dba87325440609b35dcdb605bb5ef
https://account.datascience.codata.org/index.php/up-j-dsj/article/view/1507

Surveyed common data access policies preferences amongst European Reference Networks

Autori: Cámara, Alberto Benis, Nirupama Bernabé, C. sar H. a ďalší

Predmety: FAIR data sharing, patient registries, Rare diseases

Prístupová URL adresa: https://research.rug.nl/en/publications/a0944c7e-bb47-4cd2-9878-eceab2e16744
https://hdl.handle.net/11370/a0944c7e-bb47-4cd2-9878-eceab2e16744
https://pure.amsterdamumc.nl/en/publications/b1323b12-2526-4e94-9274-868d7ab44e11