Where Can Patients Obtain Information on the Preapproval Access Pathway to Investigational Treatment in Japan? A Survey of Patient Advocacy Organizations’ Websites

Autor:	Kyoko Takashima, Haruka Nakada
Rok vydání:	2019
Předmět:	congenital hereditary and neonatal diseases and abnormalities medicine.medical_specialty Databases Factual Pharmaceutical Science patient advocacy organization Patient Advocacy 030226 pharmacology & pharmacy Patient advocacy Access to Information Health Information Systems 03 medical and health sciences 0302 clinical medicine Japan medicine Humans Pharmacology (medical) Registries Intensive care medicine preapproval access Clinical Trials as Topic Internet clinical trials Information Dissemination business.industry Therapies Investigational Treatment options Information quality respiratory system Health Literacy respiratory tract diseases Clinical trial expanded access investigational drug 030220 oncology & carcinogenesis Commentary bacteria Christian ministry business Relevant information
Zdroj:	Clinical Pharmacology in Drug Development
ISSN:	2160-7648 2160-763X
Popis:	Investigational treatments are those that have been approved for testing in humans but are not yet available as an approved treatment option. For many patients with a terminal illness who have no approved treatment option and are not eligible for a clinical trial, investigational treatments are the last resort. However, not much is known about the dissemination of information by patient advocacy organizations (PAOs). We evaluated the quantity and quality of information on preapproval access to investigational therapies provided by Japanese PAO websites between January 24 and March 29, 2019. A total of 49 PAOs were identified. Of these, 16 (33%) provided no relevant information. The most frequent information provided was the PAO's own clinical trial finder or list of clinical trials (n = 15, 31%); of the 10 cancer‐related PAOs, 5 (50%) provided this information. Nine (18%) PAOs had developed patient registries or provided a link to relevant registries. Only 1 PAO (2%) provided a link about the Ministry of Health, Labour, and Welfare trials that described the process and regulations of clinical trials. Our results indicate that PAOs do not disseminate adequate information on preapproval pathways. We suggest that the government involve PAOs in disseminating this information to both patients and physicians.
Databáze:	OpenAIRE
Externí odkaz:	https://explore.openaire.eu/search/publication?articleId=doi_dedup___::b04ae5f1d2412422662928599444a523 https://doi.org/10.1002/cpdd.745 Zobrazit plný text záznamu Plný text ve formátu PDF Plný text ve formátu HTML
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