{"id":20630,"date":"2023-01-20T10:36:29","date_gmt":"2023-01-20T09:36:29","guid":{"rendered":"https:\/\/ela-international.preprod.melisagency.fr\/?post_type=news&p=20630"},"modified":"2024-08-08T16:29:14","modified_gmt":"2024-08-08T14:29:14","slug":"results-study-impact-cald-daily-lives-families","status":"publish","type":"news","link":"https:\/\/elainternational.eu\/en\/actualites\/results-study-impact-cald-daily-lives-families\/","title":{"rendered":"Scientific publication: Results of the study \u201cimpact of cALD on the daily lives of families\u201d"},"content":{"rendered":"\n\n
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Scientific publication: Results of the study \u201cimpact of cALD on the daily lives of families\u201d<\/h3>\n

With the mobilization of the families, health professionals and ELA, and under the lead of the firm ARGO Sant\u00e9, a study on the impact of cerebral adrenoleukodystrophy on the quality of life of patients and their families<\/strong> was conducted on Leuconnect. The platform allowed the expected recruitment and a rapid implementation of the study.
\nThis survey of families explores the path of care and the impact of illness on their daily lives through quality of life questionaries and qualitative interviews.<\/p>\n

The work of the teams of ELA, Caroline Sevin and Elise Yazbeck, neuropediatricians from Bic\u00eatre hospital, Marieke Podevin and Ga\u00eblle Thomas from ARGO Sant\u00e9, and Fabrizia Bignani and Aurore Cl\u00e9ment of Bluebird Bio France, was published in the peer reviewed scientific journal \u00ab\u00a0Rare Disease and Orphan Drugs Journal\u00a0\u00bb<\/strong> (RDODJ), demonstrating the quality of the work and the robustness of the results: Scientific Article “RDODJ”<\/a>.<\/p>\n

These results are now accessible to the international scientific community and will be a reference on the subject. They provide a better understanding of the impact of the disease on the quality of life of patients and their families, leading to symptomatic treatments and better management of the disease.<\/p>\n

The first results of the study are available on Leuconnect:<\/p>\n

Results of the study “impact of cALD on the daily lives of families\u201d<\/a><\/p>\n

For more than 10 years, ELA has invested massively in ALD research, and supports all initiatives that can change the lives of patients.<\/p>\n

ELA warmly thanks the families who participated in this study for their valuable involvement in understanding the disease and its management.<\/p>\n\n <\/div>\n<\/div>\n\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":2,"featured_media":20627,"parent":0,"template":"","news_categories":[97],"class_list":["post-20630","news","type-news","status-publish","has-post-thumbnail","hentry","news_categories-international-en"],"acf":[],"yoast_head":"\nScientific publication: Results of the study \u201cimpact of cALD on the daily lives of families\u201d - ELA International<\/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:\/\/elainternational.eu\/en\/actualites\/results-study-impact-cald-daily-lives-families\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Scientific publication: Results of the study \u201cimpact of cALD on the daily lives of families\u201d - 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