{"id":10,"date":"2019-06-14T11:57:25","date_gmt":"2019-06-14T11:57:25","guid":{"rendered":"https:\/\/porphyria.network\/IPPN\/?page_id=10"},"modified":"2024-01-14T17:12:04","modified_gmt":"2024-01-14T16:12:04","slug":"publications","status":"publish","type":"page","link":"https:\/\/porphyria.network\/IPPN\/publications\/","title":{"rendered":"Publications"},"content":{"rendered":"[vc_row][vc_column][vc_column_text css=”.vc_custom_1705248718591{margin-left: 10px !important;}”]\n

Publications<\/h2>\n\n\n

Peer-reviewed papers:<\/h3>\n\n\n
1. Barman-Aks\u00f6zen, J., Andreoletti, M., & Blasimme, A. (2023). Current trials in erythropoietic
protoporphyria: are placebo controls ethical?.\u00a0Orphanet journal of rare diseases<\/em>,\u00a018<\/em>(1), 325.
https:\/\/ojrd.biomedcentral.com\/articles\/10.1186\/s13023-023-02941-w<\/a> \n

2. Barman-Aks\u00f6zen, J., Minder, A. E., Granata, F., Pettersson, M., Dechant, C., Aks\u00f6zen, M. H., & Falchetto,
R. (2023). Quality-Adjusted Life Years in Erythropoietic Protoporphyria and Other Rare Diseases: A Patient-
Initiated EQ-5D Feasibility Study.\u00a0International journal of environmental research and public health<\/em>,\u00a020<\/em>(7),
5296.\u00a0https:\/\/doi.org\/10.3390\/ijerph20075296<\/a><\/p>\n\n

3. Barman-Aks\u00f6zen,\u00a0Granata,\u00a0Aks\u00f6zen,\u00a0\u00a0Dechant\u00a0&\u00a0\u00a0Falchetto\u00a0(2022)\u00a0\u2018\u2026\u00a0they\u00a0had\u00a0interpreted\u00a0\u201cdisability\u201d as
referring to a patently visible disability\u2019: experience of a patient group with NICE,\u00a0Disability &
Society,\u00a037:7,\u00a01239-1245. https:\/\/www.tandfonline.com\/doi\/full\/10.1080\/09687599.2022.2060804<\/a><\/p>\n\n

4. Whitty, J. A., de Bekker-Grob, E. W., Cook, N. S., Terris-Prestholt, F., Drummond, M., Falchetto, R., &
Hillege, H. L. (2020). Patient Preferences in the Medical Product Lifecycle.\u00a0The patient<\/em>,\u00a013<\/em>(1), 7\u201310.
https:\/\/doi.org\/10.1007\/s40271-019-00400-y<\/a><\/p>\n\n

5.\u00a0Falchetto R. (2020). The Patient Perspective: A Matter of Minutes.\u00a0The patient<\/em>,\u00a013<\/em>(1), 1\u20136.
https:\/\/doi.org\/10.1007\/s40271-019-00399-2<\/a><\/p>\n\n

6.\u00a0Barman-Aks\u00f6zen J. Patient empowerment and access to medicines: Insights from a scientist-patient
suffering from erythropoietic protoporphyria.\u00a0Medicine Access @ Point of Care<\/em>. 2019;3.
https:\/\/journals.sagepub.com\/doi\/10.1177\/2399202619865167<\/a><\/p>\n

 <\/p>\n\n<\/div><\/div>\n\n\n

Correspondence and letters:<\/h3>\n\n\n
1. Granata, F., Dechant, C., & Falchetto, R. (2023). Dersimelagon in Erythropoietic Protoporphyrias.\u00a0The <\/em>
New England journal of medicine<\/em>,\u00a0388<\/em>(26), 2491\u20132492.\u00a0https:\/\/doi.org\/10.1056\/NEJMc2305601<\/a> \n

2. Barman-Aks\u00f6zen J. (2022). Are payors ready for transparent prices yet?.\u00a0The Lancet regional health. <\/em>
Europe<\/em>,\u00a019<\/em>, 100444.\u00a0https:\/\/doi.org\/10.1016\/j.lanepe.2022.100444<\/a><\/p>\n

 <\/p>\n\n<\/div><\/div>\n\n\n

Rapid Responses:<\/h3>\n\n

1. Barman-Aks\u00f6zen, Hauke, Falchetto (2023): A rare disease patient perspective on the proposed changes
of orphan drug regulation. https:\/\/www.bmj.com\/content\/381\/bmj-2022-072796\/rr<\/a><\/p>\n\n

2. Barman-Aks\u00f6zen, Falchetto (2023) We have already lost our trust in NICE \u2013 Our real-life case.
https:\/\/www.bmj.com\/content\/383\/bmj.p2571\/rr-3<\/a><\/p>\n[\/vc_column_text][\/vc_column][\/vc_row]\n","protected":false},"excerpt":{"rendered":"

[vc_row][vc_column][vc_column_text css=”.vc_custom_1705248718591{margin-left: 10px !important;}”] Publications Peer-reviewed papers: 1. Barman-Aks\u00f6zen, J., Andreoletti, M., & Blasimme, A. (2023). Current trials in erythropoieticprotoporphyria: are placebo controls ethical?.\u00a0Orphanet journal of rare diseases,\u00a018(1), 325.https:\/\/ojrd.biomedcentral.com\/articles\/10.1186\/s13023-023-02941-w 2. Barman-Aks\u00f6zen, J., Minder, A. E., Granata, F., Pettersson, M., Dechant, C., Aks\u00f6zen, M. H., & Falchetto,R. (2023). Quality-Adjusted Life Years in Erythropoietic Protoporphyria and Other…<\/p>\n","protected":false},"author":2,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":[],"yoast_head":"\nPublications - 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\/publications\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Publications - International Porphyria Patient Network\" \/>\n<meta property=\"og:description\" content=\"[vc_row][vc_column][vc_column_text css=”.vc_custom_1705248718591{margin-left: 10px !important;}”] Publications Peer-reviewed papers: 1. Barman-Aks\u00f6zen, J., Andreoletti, M., & Blasimme, A. (2023). Current trials in erythropoieticprotoporphyria: are placebo controls ethical?.\u00a0Orphanet journal of rare diseases,\u00a018(1), 325.https:\/\/ojrd.biomedcentral.com\/articles\/10.1186\/s13023-023-02941-w 2. Barman-Aks\u00f6zen, J., Minder, A. E., Granata, F., Pettersson, M., Dechant, C., Aks\u00f6zen, M. H., & Falchetto,R. (2023). 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