{"id":385,"date":"2020-05-03T16:36:15","date_gmt":"2020-05-03T14:36:15","guid":{"rendered":"https:\/\/porphyria.network\/IPPN\/?p=385"},"modified":"2021-07-20T08:27:12","modified_gmt":"2021-07-20T06:27:12","slug":"long-term-observational-study-demonstrates-that-epp-patients-in-the-netherlands-spend-an-additional-6-hours-per-week-outdoors-when-treated-with-afamelanotide","status":"publish","type":"post","link":"https:\/\/porphyria.network\/IPPN\/2020\/05\/long-term-observational-study-demonstrates-that-epp-patients-in-the-netherlands-spend-an-additional-6-hours-per-week-outdoors-when-treated-with-afamelanotide\/","title":{"rendered":"EPP patients spend an additional 6 hours per week outdoors when treated with afamelanotide"},"content":{"rendered":"\n

A recently published analysis of a long-term observational study by the Porphyria Center Rotterdam in the Netherlands, where erythropoietic protoporphyria (EPP) patients receive treatment, confirmed the safety and effectiveness of afamelanotide under real-world conditions (the study had been presented orally during the 2019 International Congress on Porphyrins & Porphyrias – see related post<\/a> on this site). The 117 EPP patients receiving afamelanotide in the Netherlands spent 6.1 additional hours per week outdoors and had a statistically improved quality of life as compared to baseline measurements before treatment. If patients developed phototoxic reactions, they were reported as being less painful. Overall, 98% (115 out of 117) patients continued with the treatment in the three years observational time. A trend towards decrease in effectiveness was observed towards the end of the treatment period of 60 days, indicating that a higher treatment frequency might be necessary in some individuals. Only mild and self-limiting adverse reactions were reported by the patients after administration of the implant, like nausea, fatigue and flushing, and no serious adverse event occurred in the observational period. The data collection is part of the ongoing post-authorization safety and efficacy cohort study (PASS) set up as a condition for approval of afamelanotide by the European Medicines Agency.<\/p>\n\n\n\n

This peer-reviewed publication is yet another important scientific effort, which highlights the beneficial, life-changing effects afamelanotide has on patients with EPP, and should become a valued reference to ensure healthcare systems worldwide provide unrestricted access to afamelanotide to EPP sufferers.<\/p>\n\n\n\n

Association of Afamelanotide With Improved Outcomes in Patients With Erythropoietic Protoporphyria in Clinical Practice: Wensink, D., Wagenmakers, M. A., Barman-Aks\u00f6zen, J., Friesema, E. C., Wilson, J. P., van Rosmalen, J., & Langendonk, J. G. (2020). JAMA dermatology.<\/strong><\/a> <\/p>\n","protected":false},"excerpt":{"rendered":"

A recently published analysis of a long-term observational study by the Porphyria Center Rotterdam in the Netherlands, where erythropoietic protoporphyria (EPP) patients receive treatment, confirmed the safety and effectiveness of afamelanotide under real-world conditions (the study had been presented orally during the 2019 International Congress on Porphyrins & Porphyrias – see related post on this…<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[31],"tags":[],"yoast_head":"\nEPP patients spend an additional 6 hours per week outdoors when treated with afamelanotide - International Porphyria Patient Network<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/porphyria.network\/IPPN\/2020\/05\/long-term-observational-study-demonstrates-that-epp-patients-in-the-netherlands-spend-an-additional-6-hours-per-week-outdoors-when-treated-with-afamelanotide\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"EPP patients spend an additional 6 hours per week outdoors when treated with afamelanotide - 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