{"id":3395,"date":"2023-01-09T15:49:18","date_gmt":"2023-01-09T15:49:18","guid":{"rendered":"https:\/\/cureclcn4.org\/registre-des-patients\/"},"modified":"2023-01-09T15:49:20","modified_gmt":"2023-01-09T15:49:20","slug":"registre-des-patients","status":"publish","type":"page","link":"https:\/\/cureclcn4.org\/fr\/registre-des-patients\/","title":{"rendered":"Registre des patients"},"content":{"rendered":"

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Registre des patients<\/h1>\n

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Cure CLCN4 est fier de s’associer \u00e0 Simons Searchlight<\/strong> pour h\u00e9berger un registre officiel des patients pr\u00e9sentant une variation du g\u00e8ne CLCN4. Nous invitons toutes les familles concern\u00e9es par cette modification g\u00e9n\u00e9tique \u00e0 contribuer au registre, afin de nous permettre de constituer une formidable banque d’informations sur cette importante pathologie. Un registre des patients est un \u00e9l\u00e9ment indispensable de la recherche – d\u00e9couvrez pourquoi ci-dessous.<\/p>\n

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Un registre de patients est une compilation organis\u00e9e d’informations sur des personnes atteintes d’une maladie sp\u00e9cifique. Pensez-y comme \u00e0 un classeur : il contient toutes les informations disponibles sur les personnes affect\u00e9es par une maladie, de mani\u00e8re ordonn\u00e9e. Ces informations peuvent concerner les ant\u00e9c\u00e9dents m\u00e9dicaux de chaque patient, ses ant\u00e9c\u00e9dents familiaux, ses m\u00e9dicaments et tout changement au fil du temps. Lorsque nous disposons de ces informations sur un ensemble de patients, nous pouvons commencer \u00e0 \u00e9laborer des mod\u00e8les de maladie, des fourchettes de gravit\u00e9, la mani\u00e8re dont les probl\u00e8mes \u00e9voluent dans le temps, les strat\u00e9gies de traitement qui ont fonctionn\u00e9 ou non. C’est le d\u00e9but de la recherche m\u00e9dicale. Les registres de patients permettent d’orienter la recherche scientifique vers ce qui est significatif pour les personnes concern\u00e9es, et de corr\u00e9ler ce que nous voyons en laboratoire avec ce qui se passe dans la vie r\u00e9elle. En tant que telle, elle constitue un outil fondamental pour toute bonne recherche m\u00e9dicale.
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[\/et_pb_blurb][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb _builder_version=\u00a0\u00bb4.16″ background_color=\u00a0\u00bb#ffffff\u00a0\u00bb max_width=\u00a0\u00bb1200px\u00a0\u00bb custom_padding=\u00a0\u00bb30px|80px|28px|80px|false|false\u00a0\u00bb custom_padding_tablet=\u00a0\u00bb|80px||80px|false|true\u00a0\u00bb custom_padding_phone=\u00a0\u00bb40px|30px||30px||true\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset3″ box_shadow_vertical=\u00a0\u00bb40px\u00a0\u00bb box_shadow_blur=\u00a0\u00bb100px\u00a0\u00bb box_shadow_spread=\u00a0\u00bb-30px\u00a0\u00bb box_shadow_color=\u00a0\u00bbrgba(0,0,0,0.22)\u00a0\u00bb use_custom_width=\u00a0\u00bbon\u00a0\u00bb custom_width_px=\u00a0\u00bb1200px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.16″ custom_padding=\u00a0\u00bb|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb][et_pb_blurb title=\u00a0\u00bbPourquoi les registres de patients sont-ils importants ? \u00a0\u00bb content_max_width=\u00a0\u00bb700px\u00a0\u00bb _builder_version=\u00a0\u00bb4.16″ header_level=\u00a0\u00bbh1″ header_font=\u00a0\u00bb|700|||||||\u00a0\u00bb header_text_align=\u00a0\u00bbjustify\u00a0\u00bb header_font_size=\u00a0\u00bb20px\u00a0\u00bb header_line_height=\u00a0\u00bb2em\u00a0\u00bb body_line_height=\u00a0\u00bb2em\u00a0\u00bb text_orientation=\u00a0\u00bbjustified\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb link_option_url_new_window=\u00a0\u00bbon\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

Les registres de patients peuvent \u00eatre utiles aux personnes atteintes de maladies g\u00e9n\u00e9tiques rares comme la maladie CLCN4 pour trois raisons principales :<\/span><\/p>\n

1. Les registres de patients peuvent am\u00e9liorer les soins aux patients<\/strong><\/span><\/p>\n

Lorsqu’on en sait plus sur une maladie, on peut donner plus d’informations aux familles nouvellement diagnostiqu\u00e9es, mettre \u00e0 disposition des traitements plus efficaces et mieux savoir comment utiliser ces traitements. Cela est encore plus important dans le cas de maladies rares comme la CLCN4, o\u00f9 aucun clinicien n’aurait vu suffisamment de cas pour pouvoir accumuler l’exp\u00e9rience n\u00e9cessaire. Avec chaque famille qui partage son exp\u00e9rience et ses connaissances, davantage d’informations seront ajout\u00e9es \u00e0 la banque de connaissances, am\u00e9liorant ainsi les soins aux patients collectivement et aussi individuellement, car ce qu’une famille partage peut \u00e9ventuellement aider une autre. <\/span><\/p>\n

2. Les registres amplifient votre voix<\/strong><\/span><\/p>\n

Notre registre vous demandera de donner votre point de vue sur des questions importantes vous concernant ou concernant votre enfant. Par exemple, nous vous demandons votre avis sur les sympt\u00f4mes pour lesquels il est le plus important de trouver des traitements, ou sur les traitements existants sur lesquels vous souhaiteriez \u00eatre mieux inform\u00e9. Partager votre point de vue est extr\u00eamement puissant, car cela aide les organismes de financement de la recherche, les entreprises pharmaceutiques, les organismes de r\u00e9glementation et nos associations de patients \u00e0 apprendre comment r\u00e9pondre au mieux \u00e0 vos besoins. Il est de plus en plus courant d’exiger des chercheurs qu’ils \u00e9coutent et servent les int\u00e9r\u00eats du patient, et cela devient une condition pr\u00e9alable \u00e0 l’obtention d’un financement ou \u00e0 l’approbation d’un m\u00e9dicament.<\/span><\/p>\n

3. Les registres am\u00e9liorent les chances de d\u00e9veloppement des m\u00e9dicaments<\/strong><\/span><\/p>\n

Il n’y a pas moyen d’y \u00e9chapper, le d\u00e9veloppement de m\u00e9dicaments est difficile, long et co\u00fbteux. Les entreprises pharmaceutiques sont beaucoup plus attir\u00e9es par le d\u00e9veloppement de nouvelles th\u00e9rapies pour les communaut\u00e9s de patients atteints de maladies rares qui disposent d\u00e9j\u00e0 de registres de maladies rares contenant des donn\u00e9es utiles et de familles qui ont choisi de participer \u00e0 des essais cliniques. Cela leur permet d’\u00e9conomiser beaucoup de temps et d’argent, et d’augmenter les chances de r\u00e9ussite en mati\u00e8re d’approbation r\u00e9glementaire.<\/span><\/p>\n

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[\/et_pb_blurb][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb _builder_version=\u00a0\u00bb4.16″ background_color=\u00a0\u00bb#ffffff\u00a0\u00bb max_width=\u00a0\u00bb1200px\u00a0\u00bb custom_padding=\u00a0\u00bb30px|80px|28px|80px|false|false\u00a0\u00bb custom_padding_tablet=\u00a0\u00bb|80px||80px|false|true\u00a0\u00bb custom_padding_phone=\u00a0\u00bb40px|30px||30px||true\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset3″ box_shadow_vertical=\u00a0\u00bb40px\u00a0\u00bb box_shadow_blur=\u00a0\u00bb100px\u00a0\u00bb box_shadow_spread=\u00a0\u00bb-30px\u00a0\u00bb box_shadow_color=\u00a0\u00bbrgba(0,0,0,0.22)\u00a0\u00bb use_custom_width=\u00a0\u00bbon\u00a0\u00bb custom_width_px=\u00a0\u00bb1200px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.16″ custom_padding=\u00a0\u00bb|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb][et_pb_blurb title=\u00a0\u00bbLe Registre partagera-t-il mes donn\u00e9es personnelles ? \u00a0\u00bb content_max_width=\u00a0\u00bb700px\u00a0\u00bb _builder_version=\u00a0\u00bb4.16″ header_level=\u00a0\u00bbh1″ header_font=\u00a0\u00bb|700|||||||\u00a0\u00bb header_text_align=\u00a0\u00bbjustify\u00a0\u00bb header_font_size=\u00a0\u00bb20px\u00a0\u00bb header_line_height=\u00a0\u00bb2em\u00a0\u00bb body_line_height=\u00a0\u00bb2em\u00a0\u00bb text_orientation=\u00a0\u00bbjustified\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb link_option_url_new_window=\u00a0\u00bbon\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

Toutes les recherches m\u00e9dicales sont r\u00e9gies par des r\u00e8gles r\u00e9glementaires strictes et doivent \u00eatre approuv\u00e9es par un comit\u00e9 d’\u00e9thique d\u00e9sign\u00e9 avant de pouvoir \u00eatre men\u00e9es. Un registre de patients ne fait pas exception. Vos donn\u00e9es seront conserv\u00e9es en toute s\u00e9curit\u00e9 et vos donn\u00e9es identifiables (telles que le nom, le lieu, les coordonn\u00e9es) ne seront PAS communiqu\u00e9es \u00e0 des chercheurs, \u00e0 des soci\u00e9t\u00e9s pharmaceutiques ou au grand public, sauf si vous y consentez explicitement dans un but pr\u00e9cis.<\/span><\/p>\n

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[\/et_pb_blurb][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb _builder_version=\u00a0\u00bb4.16″ background_color=\u00a0\u00bb#ffffff\u00a0\u00bb max_width=\u00a0\u00bb1200px\u00a0\u00bb custom_padding=\u00a0\u00bb30px|80px|28px|80px|false|false\u00a0\u00bb custom_padding_tablet=\u00a0\u00bb|80px||80px|false|true\u00a0\u00bb custom_padding_phone=\u00a0\u00bb40px|30px||30px||true\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset3″ box_shadow_vertical=\u00a0\u00bb40px\u00a0\u00bb box_shadow_blur=\u00a0\u00bb100px\u00a0\u00bb box_shadow_spread=\u00a0\u00bb-30px\u00a0\u00bb box_shadow_color=\u00a0\u00bbrgba(0,0,0,0.22)\u00a0\u00bb use_custom_width=\u00a0\u00bbon\u00a0\u00bb custom_width_px=\u00a0\u00bb1200px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.16″ custom_padding=\u00a0\u00bb|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb][et_pb_blurb title=\u00a0\u00bbQu’en est-il du recrutement pour les essais cliniques ?\u00a0\u00bb content_max_width=\u00a0\u00bb700px\u00a0\u00bb _builder_version=\u00a0\u00bb4.16″ header_level=\u00a0\u00bbh1″ header_font=\u00a0\u00bb|700|||||||\u00a0\u00bb header_text_align=\u00a0\u00bbjustify\u00a0\u00bb header_font_size=\u00a0\u00bb20px\u00a0\u00bb header_line_height=\u00a0\u00bb2em\u00a0\u00bb body_line_height=\u00a0\u00bb2em\u00a0\u00bb text_orientation=\u00a0\u00bbjustified\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb link_option_url_new_window=\u00a0\u00bbon\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

S’inscrire au registre des patients et partager ses informations ne signifie pas s’engager \u00e0 participer \u00e0 des essais cliniques. Il y aura un processus distinct pour recruter des patients pour des essais sp\u00e9cifiques le moment venu. Lorsque vous vous inscrirez pour participer au registre des patients, vous aurez la possibilit\u00e9 de choisir d’\u00eatre contact\u00e9 lorsqu’un essai clinique sera ouvert au recrutement. Vous serez conseill\u00e9 sur les d\u00e9tails de chaque essai en fonction de ses m\u00e9rites propres, et vous aurez le choix d’y participer ou non.<\/span><\/p>\n

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[\/et_pb_blurb][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb _builder_version=\u00a0\u00bb4.16″ background_color=\u00a0\u00bb#ffffff\u00a0\u00bb max_width=\u00a0\u00bb1200px\u00a0\u00bb custom_padding=\u00a0\u00bb30px|80px|28px|80px|false|false\u00a0\u00bb custom_padding_tablet=\u00a0\u00bb|80px||80px|false|true\u00a0\u00bb custom_padding_phone=\u00a0\u00bb40px|30px||30px||true\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset3″ box_shadow_vertical=\u00a0\u00bb40px\u00a0\u00bb box_shadow_blur=\u00a0\u00bb100px\u00a0\u00bb box_shadow_spread=\u00a0\u00bb-30px\u00a0\u00bb box_shadow_color=\u00a0\u00bbrgba(0,0,0,0.22)\u00a0\u00bb use_custom_width=\u00a0\u00bbon\u00a0\u00bb custom_width_px=\u00a0\u00bb1200px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.16″ custom_padding=\u00a0\u00bb|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb][et_pb_blurb title=\u00a0\u00bbComment puis-je m’inscrire au registre des patients et de quoi ai-je besoin ? \u00a0\u00bb url_new_window=\u00a0\u00bbon\u00a0\u00bb content_max_width=\u00a0\u00bb700px\u00a0\u00bb _builder_version=\u00a0\u00bb4.16″ header_level=\u00a0\u00bbh1″ header_font=\u00a0\u00bb|700|||||||\u00a0\u00bb header_text_align=\u00a0\u00bbjustify\u00a0\u00bb header_font_size=\u00a0\u00bb20px\u00a0\u00bb header_line_height=\u00a0\u00bb2em\u00a0\u00bb body_line_height=\u00a0\u00bb2em\u00a0\u00bb text_orientation=\u00a0\u00bbjustified\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb link_option_url_new_window=\u00a0\u00bbon\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

Notre registre de patients est h\u00e9berg\u00e9 par Simons Searchlight<\/a>, une initiative de recherche dont la mission est de faire avancer la recherche sur les changements g\u00e9n\u00e9tiques li\u00e9s \u00e0 l’autisme et aux retards de d\u00e9veloppement neurologique. La participation implique de s’inscrire en ligne aupr\u00e8s de Simons Searchlight, de soumettre un rapport de laboratoire g\u00e9n\u00e9tique (si vous en avez un) et de passer un entretien t\u00e9l\u00e9phonique de 60 \u00e0 90 minutes avec l’un des conseillers g\u00e9n\u00e9tiques de Simons, qui r\u00e9pondra aux questions pertinentes. Ils vous demanderont \u00e9galement la permission de vous contacter chaque ann\u00e9e pour mettre \u00e0 jour les informations, afin d’avoir une trace de l’\u00e9volution des choses au fil du temps.<\/span><\/p>\n

Afin de vous inscrire au registre des patients CLCN4, veuillez regarder cette vid\u00e9o de Simons Searchlight, et lorsque vous serez pr\u00eat \u00e0 commencer, veuillez <\/span>cliquez ici<\/a>. <\/span> <\/p>\n

Si vous avez des questions sur le processus d’inscription, vous pouvez trouver des r\u00e9ponses dans les FAQ<\/a> de Simons Searchlight ou les contacter directement. <\/a> <\/span><\/p>\n

[\/et_pb_blurb][et_pb_video src=\u00a0\u00bbhttps:\/\/www.youtube.com\/watch?v=n5e5AKPcKKw\u00a0\u00bb _builder_version=\u00a0\u00bb4.16″ _module_preset=\u00a0\u00bbdefault\u00a0\u00bb max_width=\u00a0\u00bb70%\u00a0\u00bb module_alignment=\u00a0\u00bbcenter\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][\/et_pb_video][\/et_pb_column][\/et_pb_row][et_pb_row custom_padding_last_edited=\u00a0\u00bbon|phone\u00a0\u00bb _builder_version=\u00a0\u00bb4.16″ background_color=\u00a0\u00bb#ffffff\u00a0\u00bb max_width=\u00a0\u00bb1200px\u00a0\u00bb custom_padding=\u00a0\u00bb30px|80px|28px|80px|false|false\u00a0\u00bb custom_padding_tablet=\u00a0\u00bb|80px||80px|false|true\u00a0\u00bb custom_padding_phone=\u00a0\u00bb40px|30px||30px||true\u00a0\u00bb box_shadow_style=\u00a0\u00bbpreset3″ box_shadow_vertical=\u00a0\u00bb40px\u00a0\u00bb box_shadow_blur=\u00a0\u00bb100px\u00a0\u00bb box_shadow_spread=\u00a0\u00bb-30px\u00a0\u00bb box_shadow_color=\u00a0\u00bbrgba(0,0,0,0.22)\u00a0\u00bb use_custom_width=\u00a0\u00bbon\u00a0\u00bb custom_width_px=\u00a0\u00bb1200px\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb][et_pb_column type=\u00a0\u00bb4_4″ _builder_version=\u00a0\u00bb4.16″ custom_padding=\u00a0\u00bb|||\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb custom_padding__hover=\u00a0\u00bb|||\u00a0\u00bb][et_pb_blurb title=\u00a0\u00bbQue puis-je faire d’autre pour aider ? \u00a0\u00bb content_max_width=\u00a0\u00bb700px\u00a0\u00bb _builder_version=\u00a0\u00bb4.16″ header_level=\u00a0\u00bbh1″ header_font=\u00a0\u00bb|700|||||||\u00a0\u00bb header_text_align=\u00a0\u00bbjustify\u00a0\u00bb header_font_size=\u00a0\u00bb20px\u00a0\u00bb header_line_height=\u00a0\u00bb2em\u00a0\u00bb body_line_height=\u00a0\u00bb2em\u00a0\u00bb text_orientation=\u00a0\u00bbjustified\u00a0\u00bb width=\u00a0\u00bb100%\u00a0\u00bb custom_padding=\u00a0\u00bb0px||0px||false|false\u00a0\u00bb link_option_url_new_window=\u00a0\u00bbon\u00a0\u00bb global_colors_info=\u00a0\u00bb{}\u00a0\u00bb]<\/p>\n

Si vous \u00eates d\u00e9j\u00e0 inscrit au registre des patients et que vous souhaitez continuer \u00e0 aider la communaut\u00e9 CLCN4, rendez-vous sur notre onglet Get Involved pour d\u00e9couvrir d’autres fa\u00e7ons de vous impliquer, notamment en faisant des dons, en collectant des fonds et en sensibilisant le public ! <\/span><\/p>\n

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Sponsors de la Fondation d’entreprise<\/h2>\n

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Prenez contact avec nous. Participez.<\/h2>\n

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