Real-world data in retinal diseases treated with anti-vascular endothelial growth factor (anti-VEGF) therapy – a systematic approach to identify and characterize data sources

Autor: Paul Mitchell, Obaro Evuarherhe, Gemma Carter, Jean-François Korobelnik, James S Talks, Taiji Sakamoto, Robert Finger, Tien Yin Wong, Vincent Daien, Bora Eldem, Joao Carrasco
Přispěvatelé: Neuropsychiatrie : recherche épidémiologique et clinique (PSNREC), Université Montpellier 1 (UM1)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Montpellier (UM), Centre Hospitalier Régional Universitaire [Montpellier] (CHRU Montpellier), The University of Sydney, Hacettepe University = Hacettepe Üniversitesi, Newcastle Upon Tyne Hospitals NHS Foundation Trust, Bordeaux population health (BPH), Université de Bordeaux (UB)-Institut de Santé Publique, d'Épidémiologie et de Développement (ISPED)-Institut National de la Santé et de la Recherche Médicale (INSERM), The Westmead Institute for Medical Research, University of Bonn, Kagoshima University Graduate School of Medical and Dental Sciences, Duke-National University of Singapore Graduate Medical School, Department of Pharmacology [Oxford], University of Oxford [Oxford], Internationaler Hauptsitz von Consumer Health, University of Oxford, Salvy-Córdoba, Nathalie
Jazyk: angličtina
Rok vydání: 2019
Předmět:
Vascular Endothelial Growth Factor A
medicine.medical_specialty
Choroidal neovascularization
Visual Acuity
MEDLINE
Information Storage and Retrieval
Angiogenesis Inhibitors
Scientific literature
Disease
Retinal vein occlusion
03 medical and health sciences
0302 clinical medicine
lcsh:Ophthalmology
Diabetic macular edema
medicine
Humans
Medical physics
030212 general & internal medicine
Anti vegf
[SDV.MHEP] Life Sciences [q-bio]/Human health and pathology
business.industry
Age-related macular degeneration
Anti-VEGF
Usability
General Medicine
Real-world data
Retinal diseases
3. Good health
Ophthalmology
Systematic review
lcsh:RE1-994
Intravitreal Injections
030221 ophthalmology & optometry
Observational study
business
Real world data
[SDV.MHEP]Life Sciences [q-bio]/Human health and pathology
Research Article
Zdroj: BMC Ophthalmology
BMC Ophthalmology, BioMed Central, 2019, 19 (1), ⟨10.1186/s12886-019-1208-9⟩
BMC Ophthalmology, Vol 19, Iss 1, Pp 1-12 (2019)
BMC Ophthalmology, 2019, 19 (1), ⟨10.1186/s12886-019-1208-9⟩
ISSN: 1471-2415
Popis: Background Real-world data (RWD) has been a valuable addition to the scientific literature regarding treatment pathways, clinical outcomes and characteristics of patients with retinal diseases in recent years. Registries, observational studies and patient databases are often used for real-world research. However, there is limited information for each data source on the design, consistency, data captured, limitations and usability for assessing research questions. Using a systematic approach, we identified RWD sources for patients with retinal diseases and assessed them for completeness of data relating to different outcomes. Methods A systematic literature review was carried out to identify RWD sources for patients with retinal disease. Potentially relevant articles published between 2006 and 2016 were screened following electronic searches in Embase and MEDLINE. Congress and supplementary searches were undertaken to identify RWD sources that may not be referenced in full publications. For each data source, availability and quantity of data on baseline status, clinical outcomes, treatment and management, safety, and patient-reported and economic burden were assessed using a bespoke completeness assessment tool based on International Consortium for Health Outcomes Measurement guidelines for macular degeneration. Completeness of data for each area of interest in each data source was assessed and rated using a ‘good–moderate–poor’ rating system based on availability and quantity of available data. Each data source was then given an overall score based on its score for each of the 7 areas of interest. Results A total of 128 RWD sources from 32 countries were identified. Of the identified sources, 64 sources from 16 countries of interest were analyzed. Most of these sources provided information on baseline status and clinical outcomes and treatment, but few collected data on economic and patient-reported burden. Of the RWD sources analyzed, 10 scored highly in the overall completeness assessment, collecting data on most or all of the areas of interest; these sources are considered to be robust data sources for performing ophthalmology real-world studies. Conclusions The study provides a comprehensive list of RWD sources for patients with retinal disease, many of which will be useful for conducting real-world studies in the field of ophthalmology.
Databáze: OpenAIRE
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