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Le Registre suisse des maladies neuromusculaires (Swiss-Reg-NMD<\/a>) recueille des informations m\u00e9dicales aupr\u00e8s des personnes atteintes d’une maladie neuromusculaire. Le registre est tenu par des m\u00e9decins suisses.<\/p>\n De nombreux progr\u00e8s ont \u00e9t\u00e9 r\u00e9alis\u00e9s dans la recherche sur les maladies neuromusculaires ces derni\u00e8res ann\u00e9es. De nouveaux m\u00e9dicaments sont constamment d\u00e9velopp\u00e9s et test\u00e9s. Le registre facilite l’acc\u00e8s des patients aux \u00e9tudes th\u00e9rapeutiques.<\/p>\n Combien de personnes atteintes d’une maladie neuromusculaire y a-t-il en Suisse? Comment sont-elles trait\u00e9es? Quelles th\u00e9rapies sont efficaces? Le registre souhaite r\u00e9pondre \u00e0 ces questions et \u00e0 d’autres. Pour ce faire, il a besoin d’informations d\u00e9taill\u00e9es. Il recueille des informations m\u00e9dicales \u00e0 partir des dossiers m\u00e9dicaux (par exemple sur le diagnostic, les th\u00e9rapies ou les m\u00e9dicaments). De plus, il envoie des questionnaires aux familles concern\u00e9es sur leurs besoins, leur qualit\u00e9 de vie, leur scolarit\u00e9 ou leur nutrition. L’\u00e9valuation nationale de ces donn\u00e9es permet d’\u00e9laborer des mesures pour optimiser le traitement et l’inclusion des personnes atteintes d’une maladie neuromusculaire.<\/p>\n Le m\u00e9decin traitant doit proc\u00e9der \u00e0 l’enregistrement. Vous pouvez \u00e9galement contacter directement le registre: swiss-reg-nmd@ispm.unibe.ch<\/a><\/p>\n [\/et_pb_text][et_pb_image src=\u00a0\u00bbhttps:\/\/progena.ch\/wp-content\/uploads\/2019\/09\/Register_DMD.jpg\u00a0\u00bb _builder_version=\u00a0\u00bb3.27.4″ _i=\u00a0\u00bb2″ _address=\u00a0\u00bb0.0.0.2″][\/et_pb_image][et_pb_text _builder_version=\u00a0\u00bb3.27.4″ _i=\u00a0\u00bb3″ _address=\u00a0\u00bb0.0.0.3″]Swiss-reg-nmd@hin.ch<\/a> [et_pb_section fb_built=\u00a0\u00bb1″ _builder_version=\u00a0\u00bb3.27.4″ custom_padding=\u00a0\u00bb20px||||false|false\u00a0\u00bb fb_built=\u00a0\u00bb1″ _i=\u00a0\u00bb0″ _address=\u00a0\u00bb0″][et_pb_row column_structure=\u00a0\u00bb2_3,1_3″ admin_label=\u00a0\u00bbLigne\u00a0\u00bb _builder_version=\u00a0\u00bb3.27.4″ custom_padding=\u00a0\u00bb20px||||false|false\u00a0\u00bb make_fullwidth=\u00a0\u00bboff\u00a0\u00bb use_custom_width=\u00a0\u00bboff\u00a0\u00bb width_unit=\u00a0\u00bboff\u00a0\u00bb custom_width_px=\u00a0\u00bb1080px\u00a0\u00bb custom_width_percent=\u00a0\u00bb80%\u00a0\u00bb _i=\u00a0\u00bb0″ _address=\u00a0\u00bb0.0″][et_pb_column type=\u00a0\u00bb2_3″ _builder_version=\u00a0\u00bb3.25″ custom_padding=\u00a0\u00bb|||\u00a0\u00bb _i=\u00a0\u00bb0″ _address=\u00a0\u00bb0.0.0″ custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb][et_pb_text _builder_version=\u00a0\u00bb3.27.4″ text_orientation=\u00a0\u00bbcenter\u00a0\u00bb text_text_align=\u00a0\u00bbcenter\u00a0\u00bb _i=\u00a0\u00bb0″ _address=\u00a0\u00bb0.0.0.0″] Registre suisse des patients atteints de maladies neuromusculaires [\/et_pb_text][et_pb_text _builder_version=\u00a0\u00bb3.27.4″ hover_enabled=\u00a0\u00bb0″ _i=\u00a0\u00bb1″ _address=\u00a0\u00bb0.0.0.1″] Qu’est-ce que le registre suisse des maladies neuromusculaires? Le Registre suisse des maladies […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","footnotes":""},"class_list":["post-30299","page","type-page","status-publish","hentry"],"yoast_head":"\n\u00c0 quoi sert ce registre?<\/h3>\n
\nhttps:\/\/www.swiss-reg-nmd.ch\/<\/a>[\/et_pb_text][\/et_pb_column][et_pb_column type=\u00a0\u00bb1_3″ _builder_version=\u00a0\u00bb3.25″ custom_padding=\u00a0\u00bb|||\u00a0\u00bb _i=\u00a0\u00bb1″ _address=\u00a0\u00bb0.0.1″ custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb][et_pb_sidebar area=\u00a0\u00bbet_pb_widget_area_3″ _builder_version=\u00a0\u00bb3.27.4″ body_font=\u00a0\u00bb|||on|||||\u00a0\u00bb body_text_align=\u00a0\u00bbright\u00a0\u00bb body_font_size=\u00a0\u00bb14px\u00a0\u00bb body_letter_spacing=\u00a0\u00bb1px\u00a0\u00bb body_line_height=\u00a0\u00bb2em\u00a0\u00bb _i=\u00a0\u00bb0″ _address=\u00a0\u00bb0.0.1.0″][\/et_pb_sidebar][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false},"excerpt":{"rendered":"