{"id":420,"date":"2026-05-11T12:28:14","date_gmt":"2026-05-11T12:28:14","guid":{"rendered":"https:\/\/hcp.biomarin.com\/en-us\/cln2\/?page_id=420"},"modified":"2026-09-15T13:52:18","modified_gmt":"2026-09-15T13:52:18","slug":"goals-of-management","status":"publish","type":"page","link":"https:\/\/hcp.biomarin.com\/en-us\/cln2\/goals-of-management\/","title":{"rendered":"Goals of Management"},"content":{"rendered":"
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\n\t\t\t\t\t\t\t\t Management<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t

Goals of Management\n<\/h1>\n\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n
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Experts have identified CLN2-\u00adspecific disease management strategies that can greatly impact patient outcomes<\/h2>\n\n

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CLN2-specific care aims to maintain function for as long as possible and address quality of life<\/h2>\n

The goals of CLN2 disease care should evolve as the disease progresses<\/h4>\n\n

Experts have noted that reassessing the goals of care and management is important throughout the course of the disease.1<\/sup><\/p>\n

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  • Early in the disease:<\/strong> Goals strive to maintain function for as long as possible<\/li>\n
  • Later in the disease:<\/strong> Goals evolve toward maintenance of quality of life and pain control as functions are lost<\/li>\n<\/ul>\n\n <\/div>\n <\/div>\n <\/div>\n<\/div>\n\n
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    Understanding the needs of families across the spectrum of care can make an important difference in the approach to CLN2-specific management strategies.1<\/sup><\/p>\n<\/figcaption>\n <\/figure>\n <\/div>\n <\/div>\n<\/div>\n\n

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    Though these are CLN2 disease-specific management strategies, some may apply to the management of other NCLs.<\/p>\n<\/figcaption>\n <\/figure>\n <\/div>\n <\/div>\n<\/div>\n\n

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    CLN2 disease\u2013specific care can positively impact the quality of life of the child and the family.\n<\/h2>\n \t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n
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    Palliative care<\/h4>\n\n

    This concept of care can be defined by the broader idea of supporting the body, spirit, and mind of both the child and the family to optimize quality of life.1<\/sup><\/p>\n

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    • Experts recommend discussions be initiated early, prior to physical and emotional exhaustion, with ongoing dialogue establishing trust with the palliative care team and ensuring parents\u2019 goals are met<\/li>\n
    • Home nursing can assist with everyday care to manage pain and prevent complications<\/li>\n
    • Various types of hospice care can help provide respite for families, not just at end of life<\/li>\n
    • Family and individual therapy ranges from marriage and family to grief counseling, to help guide decision-making and plan for transitions as the disease progresses<\/li>\n<\/ul>\n\n <\/div>\n <\/div>\n <\/div>\n<\/div>\n\n
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      References:\n<\/h4>\n\t\t\t\t\t\t
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      1. Williams RE, Adams HR, Blohm M, et al. Management Strategies for CLN2 Disease. Pediatr Neurol.<\/em> 2017 Apr;69:102-112. doi: 10.1016\/j.pediatrneurol.2017.01.034.\n<\/span><\/li>\n <\/ol>\n\t\t\t\t\t<\/div>\n\t<\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":2,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"class_list":["post-420","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"\nCLN2 Connection | Goals of Management | HCP BioMarin<\/title>\n<meta name=\"description\" content=\"Explore the goals of CLN2 disease management, including slowing disease progression, managing symptoms and supporting patients and their families.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/hcp.biomarin.com\/en-us\/cln2\/goals-of-management\/\" \/>\n<meta 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