{"id":9602,"date":"2026-04-15T13:52:58","date_gmt":"2026-04-15T11:52:58","guid":{"rendered":"https:\/\/ern-ithaca.eu\/?page_id=9602"},"modified":"2026-04-17T10:54:41","modified_gmt":"2026-04-17T08:54:41","slug":"iliad-transparency","status":"publish","type":"page","link":"https:\/\/ern-ithaca.eu\/es\/our-research-activities\/iliad\/iliad-transparency\/","title":{"rendered":"ILIAD Transparency"},"content":{"rendered":"<h2 class=\"wp-block-heading\"><strong>\u00c0 propos du registre ILIAD<\/strong><\/h2>\n\n\n\n<div class=\"wp-block-buttons is-layout-flex wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link wp-element-button\" href=\"https:\/\/ern-ithaca.eu\/es\/our-research-activities\/iliad\/iliad-data-protection-officers\/\">Trouver votre d\u00e9l\u00e9gu\u00e9 \u00e0 la protection des donn\u00e9es \/ Find your data protection officer<\/a><\/div>\n<\/div>\n\n\n\n<p class=\"wp-block-paragraph\">(English version follows)<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Le registre ILIAD (<em>International Library of Intellectual Disability and Anomalies of Development<\/em>) est un registre europ\u00e9en de patients destin\u00e9 \u00e0 faire progresser la recherche, le diagnostic et la prise en charge des personnes atteintes de syndromes de malformations rares (multiples) et de troubles rares du d\u00e9veloppement intellectuel et neurod\u00e9veloppemental d\u2019origine g\u00e9n\u00e9tique, g\u00e9nomique, chromosomique ou environnementale. D\u00e9velopp\u00e9 sous l&#8217;\u00e9gide du R\u00e9seau europ\u00e9en de r\u00e9f\u00e9rence (ERN) ITHACA, ILIAD met en relation les professionnels de sant\u00e9 d\u2019H\u00f4pitaux Universitaires (d\u00e9sign\u00e9s ici comme HCP&nbsp;: <em>Health Care Providers<\/em>) de 25 \u00c9tats membres de l&#8217;UE et de la Norv\u00e8ge, cr\u00e9ant ainsi une plateforme s\u00e9curis\u00e9e et interop\u00e9rable pour la collecte, le stockage et l&#8217;analyse des donn\u00e9es des patients.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Le registre sert de ressource aux professionnels de sant\u00e9 et aux chercheurs, permettant l&#8217;\u00e9tude de l&#8217;histoire naturelle, de l&#8217;\u00e9pid\u00e9miologie et de l&#8217;\u00e9volution des maladies rares. En regroupant des donn\u00e9es provenant de diverses sources, ILIAD soutient la prise en charge fond\u00e9e sur des donn\u00e9es valid\u00e9es et la recherche clinique, am\u00e9liorant ainsi la qualit\u00e9 de vie des patients et de leurs familles. Le registre respecte des normes strictes en mati\u00e8re de protection des donn\u00e9es, notamment la conformit\u00e9 au RGPD, la pseudonymisation et le stockage s\u00e9curis\u00e9 des donn\u00e9es, garantissant ainsi la confidentialit\u00e9 des patients et une utilisation \u00e9thique des donn\u00e9es.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Le registre se compose d\u2019un \u00ab registre central \u00bb qui comprend des informations g\u00e9n\u00e9rales, le diagnostic clinique et les r\u00e9sultats g\u00e9n\u00e9tiques li\u00e9s au diagnostic. Pour des groupes sp\u00e9cifiques de patients, le registre est compl\u00e9t\u00e9 de sous-registres, qui comprennent davantage de donn\u00e9es m\u00e9dicales.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Gouvernance du registre<\/strong>&nbsp;: Le registre est supervis\u00e9 par un comit\u00e9 scientifique constitu\u00e9 de personnes membres de l\u2019ERN ITHACA \u2013 le comit\u00e9 de pilotage de l\u2019ILIAD \u2013 qui examine toutes les demandes d\u2019acc\u00e8s aux dossiers. Le comit\u00e9 de pilotage comprend des repr\u00e9sentants des patients issus de groupes de soutien aux familles de l\u2019UE. Outre le comit\u00e9 de pilotage g\u00e9n\u00e9ral, des comit\u00e9s de pilotage sp\u00e9cifiques \u00e0 chaque groupe de maladie supervisent l\u2019utilisation de chaque sous-registre.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Pourquoi avons-nous besoin d\u2019un registre de patients regroupant des donn\u00e9es provenant de toute l\u2019Europe ?<\/h2>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Pour am\u00e9liorer les parcours de soin<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">Les maladies rares touchent tr\u00e8s peu de personnes dans chaque pays. Les registres europ\u00e9ens des maladies rares constituent un outil puissant pour mieux comprendre comment ces affections \u00e9voluent au fil du temps et comment elles affectent la vie quotidienne des patients et de leurs familles. En rassemblant les informations provenant de nombreuses personnes atteintes de la m\u00eame maladie ou de pathologies apparent\u00e9es dans diff\u00e9rents pays, ils permettent de suivre l&#8217;\u00e9volution naturelle d&#8217;une maladie sur plusieurs ann\u00e9es. Cela aide les m\u00e9decins et les chercheurs \u00e0 reconna\u00eetre les premiers signes, \u00e0 surveiller l&#8217;\u00e9volution des sympt\u00f4mes avec l&#8217;\u00e2ge et \u00e0 identifier les facteurs susceptibles d&#8217;influencer le d\u00e9roulement de la maladie. Ces connaissances sont \u00e0 leur tour essentielles pour am\u00e9liorer les parcours de soins, organiser un suivi adapt\u00e9, identifier les traitements les plus appropri\u00e9s et \u00e9laborer des recommandations mieux adapt\u00e9es aux besoins r\u00e9els des patients.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Pour augmenter les connaissances sur les maladies rares par la recherche m\u00e9dicale<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">Ces registres facilitent \u00e9galement consid\u00e9rablement la prise de contact avec les patients et les familles susceptibles d&#8217;\u00eatre int\u00e9ress\u00e9s par une participation \u00e0 la recherche m\u00e9dicale. Lorsque vous acceptez que vos donn\u00e9es soient incluses, le registre peut \u00eatre utilis\u00e9 pour identifier les personnes r\u00e9pondant aux crit\u00e8res d\u2019un projet de recherche sp\u00e9cifique et pour les contacter de mani\u00e8re organis\u00e9e et respectueuse, toujours dans le respect des r\u00e8gles de protection des donn\u00e9es et des r\u00e8gles \u00e9thiques. Cela est particuli\u00e8rement important dans le cas des maladies rares, o\u00f9 les patients sont peu nombreux, souvent dispers\u00e9s dans de nombreux centres en Europe, et difficiles \u00e0 trouver pour les chercheurs travaillant \u00e0 l\u2019am\u00e9lioration des outils de diagnostic ou des traitements.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\"><strong>Pour faciliter l\u2019acc\u00e8s aux th\u00e9rapeutiques innovantes et aux nouveaux traitements<\/strong><\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">Plus important encore, les registres europ\u00e9ens constituent un moyen simple et efficace de partager des informations sur les nouvelles th\u00e9rapies et les possibilit\u00e9s de participer \u00e0 des essais th\u00e9rapeutiques innovants. Ils offrent un canal par lequel des informations valid\u00e9es et \u00e0 jour peuvent parvenir plus rapidement aux patients et \u00e0 leurs familles, par exemple lorsqu\u2019un nouveau traitement devient disponible, lorsqu\u2019une \u00e9tude est lanc\u00e9e ou lorsque les recommandations de suivi changent. En participant \u00e0 un tel registre, vous contribuez non seulement \u00e0 faire progresser les connaissances sur votre maladie, mais vous augmentez \u00e9galement les chances que vous-m\u00eame et d\u2019autres personnes atteintes de la m\u00eame maladie soyez inform\u00e9s \u00e0 temps des opportunit\u00e9s de recherche et des nouveaux traitements potentiels.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">C&#8217;est la raison pour laquelle les professionnels de sant\u00e9 demandent \u00e0 leurs patients leur consentement pour inclure leurs donn\u00e9es dans le registre ILIAD afin de mener des recherches conform\u00e9ment aux lois nationales et europ\u00e9ennes sur la protection des donn\u00e9es et aux directives \u00e9thiques. Seules les donn\u00e9es n\u00e9cessaires \u00e0 ces recherches sont enregistr\u00e9es et pourront \u00eatre partag\u00e9es avec les utilisateurs autoris\u00e9s du registre. Votre nom, pr\u00e9nom, date de naissance compl\u00e8te ou adresse ne sont pas communiqu\u00e9s. Vous n\u2019\u00eates identifi\u00e9 dans le registre que par un code pseudonymis\u00e9. La confidentialit\u00e9 de vos donn\u00e9es est garantie conform\u00e9ment aux exigences \u00e9thiques et l\u00e9gales en vigueur. Seul votre m\u00e9decin sera en mesure de relier vos donn\u00e9es pseudonymis\u00e9es \u00e0 votre personne. Ceci est important car nous devons pouvoir vous recontacter si une recherche est susceptible d\u2019avoir un b\u00e9n\u00e9fice direct pour votre sant\u00e9, votre suivi ou l\u2019acc\u00e8s \u00e0 des essais th\u00e9rapeutiques. Par cons\u00e9quent, le risque de r\u00e9identification par des personnes non autoris\u00e9es est minime.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Comment fonctionne l&#8217;acc\u00e8s aux donn\u00e9es dans le registre ILIAD<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Le registre ILIAD est une base de donn\u00e9es s\u00e9curis\u00e9e qui collecte et stocke des informations sur les patients atteints de troubles rares du d\u00e9veloppement et du neurod\u00e9veloppement. Afin de garantir une utilisation responsable et \u00e9thique des donn\u00e9es, le registre ILIAD dispose d&#8217;un processus structur\u00e9 pour accorder l&#8217;acc\u00e8s aux informations qu&#8217;il d\u00e9tient. Voici comment cela fonctionne :<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">1. Qui peut acc\u00e9der aux donn\u00e9es ?<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">Le registre ILIAD permet \u00e0 diff\u00e9rents groupes de personnes d&#8217;acc\u00e9der \u00e0 ses donn\u00e9es, en fonction de leur r\u00f4le et du type de donn\u00e9es dont ils ont besoin. Ces groupes comprennent :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Visiteurs<\/strong> : Tout le monde peut consulter le site web du registre ILIAD et acc\u00e9der \u00e0 des informations g\u00e9n\u00e9rales et non identifiables, telles que le nombre total de patients dans le registre ou le nombre de patients atteints d&#8217;une affection sp\u00e9cifique. Ces donn\u00e9es sont agr\u00e9g\u00e9es (regroup\u00e9es) et ne contiennent aucune information personnelle.<\/li>\n\n\n\n<li><strong>Utilisateurs enregistr\u00e9s<\/strong> : Les professionnels de sant\u00e9 (tels que les m\u00e9decins ou les chercheurs) qui travaillent dans des HCP &#8211; h\u00f4pitaux ou des \u00e9tablissements faisant partie du r\u00e9seau ERN ITHACA &#8211; peuvent s\u2019enregistrer pour acc\u00e9der \u00e0 des donn\u00e9es plus d\u00e9taill\u00e9es, uniquement au sein de leur propre \u00e9tablissement. Ces utilisateurs doivent \u00eatre valid\u00e9s et sont g\u00e9n\u00e9ralement affili\u00e9s \u00e0 un prestataire de soins de sant\u00e9 au sein du r\u00e9seau.<\/li>\n\n\n\n<li><strong>Utilisateurs enregistr\u00e9s actifs<\/strong> : il s&#8217;agit d&#8217;utilisateurs enregistr\u00e9s dont les \u00e9tablissements ont fourni des donn\u00e9es concernant au moins 50 patients au cours des deux derni\u00e8res ann\u00e9es. Ils ont acc\u00e8s \u00e0 des donn\u00e9es agr\u00e9g\u00e9es plus d\u00e9taill\u00e9es, mais toujours pseudonymis\u00e9es (cod\u00e9es pour prot\u00e9ger les identit\u00e9s), au sein de leur propre \u00e9tablissement.<\/li>\n\n\n\n<li><strong>Utilisateurs autoris\u00e9s<\/strong> : les chercheurs ou experts qui ne font pas partie du r\u00e9seau ERN ITHACA mais qui ont besoin d&#8217;acc\u00e9der aux donn\u00e9es pour des projets de recherche sp\u00e9cifiques doivent en faire la demande. Leurs demandes sont examin\u00e9es par le Comit\u00e9 d&#8217;acc\u00e8s aux donn\u00e9es (DAC), un groupe d&#8217;experts membres du Comit\u00e9 de pilotage de l&#8217;ERN ILIAD, qui comprend des professionnels de sant\u00e9, des repr\u00e9sentants des patients et des sp\u00e9cialistes en \u00e9thique et en droit. Si leur demande est approuv\u00e9e, ces utilisateurs peuvent acc\u00e9der \u00e0 des donn\u00e9es individuelles pseudonymis\u00e9es ou \u00e0 des donn\u00e9es agr\u00e9g\u00e9es, en fonction des besoins du projet. Il existe un DAC g\u00e9n\u00e9ral qui \u00e9value toutes les demandes de recherche. Lorsque la demande concerne un sous-registre, le DAC sollicite l&#8217;avis du comit\u00e9 de pilotage sp\u00e9cifique \u00e0 ce sous-registre, y compris celui des repr\u00e9sentants des patients au sein des comit\u00e9s de pilotage des registres sp\u00e9cifiques aux sous-registres.<\/li>\n\n\n\n<li><strong>Utilisateurs sp\u00e9ciaux<\/strong> : ce groupe comprend des experts ext\u00e9rieurs au r\u00e9seau ERN, tels que des chercheurs de pays non membres de l&#8217;UE, des associations de patients ou des d\u00e9cideurs politiques. Leur acc\u00e8s est \u00e9valu\u00e9 au cas par cas par le DAC et doit s&#8217;aligner sur les objectifs du registre.<\/li>\n\n\n\n<li><strong>Administrateurs<\/strong> : Il s&#8217;agit des membres du DAC, des chefs de projet et des gestionnaires de donn\u00e9es qui supervisent le fonctionnement du registre, en veillant \u00e0 ce que les donn\u00e9es soient utilis\u00e9es correctement et en toute s\u00e9curit\u00e9.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\">2. \u00c0 quelles donn\u00e9es peut-on acc\u00e9der ?<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">Le registre ILIAD contient diff\u00e9rents types de donn\u00e9es, et l&#8217;acc\u00e8s d\u00e9pend du r\u00f4le de l&#8217;utilisateur et de l&#8217;objet de sa demande :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Donn\u00e9es publiques<\/strong> : accessibles \u00e0 tous, elles comprennent des statistiques g\u00e9n\u00e9rales, telles que le nombre total de patients enregistr\u00e9s par pays, la liste des g\u00e8nes pour lesquels au moins un patient est r\u00e9pertori\u00e9, le nombre de patients porteurs d\u2019une mutation g\u00e9n\u00e9tique ou d\u2019un diagnostic sp\u00e9cifique (s\u2019il y a moins de 5 patients, le nombre indiqu\u00e9 est \u00ab moins de 5 \u00bb). Ces donn\u00e9es sont anonymes et agr\u00e9g\u00e9es, ce qui signifie qu\u2019elles ne peuvent \u00eatre associ\u00e9es \u00e0 aucun individu.<\/li>\n\n\n\n<li><strong>Donn\u00e9es restreintes<\/strong> : elles comprennent les donn\u00e9es individuelles pseudonymis\u00e9es des patients, accessibles uniquement aux utilisateurs autoris\u00e9s (tels que les chercheurs ou les cliniciens) apr\u00e8s approbation par le DAC. Les donn\u00e9es pseudonymis\u00e9es signifient que tous les identifiants personnels (tels que les noms, pr\u00e9nom, date de naissance compl\u00e8te ou adresses) ne sont jamais consultables&nbsp;: chaque patient est identifi\u00e9 uniquement par un pseudonyme cod\u00e9, de sorte que les individus ne peuvent pas \u00eatre directement identifi\u00e9s.<\/li>\n\n\n\n<li><strong>Donn\u00e9es non anonymis\u00e9es<\/strong> : ce type de donn\u00e9es, qui comprend des identifiants personnels, n\u2019est accessible qu\u2019au personnel autoris\u00e9 au sein de l\u2019\u00e9tablissement de sant\u00e9 o\u00f9 les donn\u00e9es ont \u00e9t\u00e9 initialement collect\u00e9es. Elles ne sont jamais partag\u00e9es en dehors de cet \u00e9tablissement.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\">3. Comment l&#8217;acc\u00e8s est-il accord\u00e9 ?<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">Afin de garantir une utilisation \u00e9thique et responsable des donn\u00e9es, le registre ILIAD suit une proc\u00e9dure claire pour l&#8217;octroi de l&#8217;acc\u00e8s :<\/p>\n\n\n\n<ol class=\"wp-block-list\">\n<li>Soumission de la demande : les chercheurs ou experts qui ont besoin d&#8217;acc\u00e9der aux donn\u00e9es doivent remplir un formulaire de demande de donn\u00e9es, en expliquant l&#8217;objectif de leur projet, les donn\u00e9es dont ils ont besoin et la mani\u00e8re dont elles seront utilis\u00e9es.<\/li>\n\n\n\n<li>Examen par le DAC et, le cas \u00e9ch\u00e9ant, par les membres du comit\u00e9 de pilotage sp\u00e9cifique au registre : le DAC examine chaque demande pour s\u2019assurer qu\u2019elle est conforme aux objectifs et aux normes \u00e9thiques du registre. Il v\u00e9rifie :\n<ol style=\"list-style-type:lower-alpha\" class=\"wp-block-list\">\n<li>Si le projet est scientifiquement valable et susceptible de contribuer \u00e0 l\u2019am\u00e9lioration des connaissances sur les maladies rares.<\/li>\n\n\n\n<li>Si le demandeur est qualifi\u00e9 pour utiliser les donn\u00e9es.<\/li>\n\n\n\n<li>S\u2019il existe des conflits d\u2019int\u00e9r\u00eats ou des chevauchements avec d\u2019autres projets.<\/li>\n<\/ol>\n<\/li>\n\n\n\n<li><strong>Approbation ou refus<\/strong> : le DAC fournit un retour dans les 4 semaines suivant la r\u00e9ception d&#8217;une demande. En cas d&#8217;approbation, le demandeur doit signer un accord de transfert de donn\u00e9es, qui d\u00e9finit les modalit\u00e9s d&#8217;utilisation des donn\u00e9es et garantit le respect des lois sur la protection de la vie priv\u00e9e (telles que le RGPD).<\/li>\n\n\n\n<li><strong>Partage des donn\u00e9es<\/strong> : une fois approuv\u00e9es, les donn\u00e9es demand\u00e9es sont partag\u00e9es avec le chercheur. Pour les donn\u00e9es individuelles des patients, seuls des enregistrements pseudonymis\u00e9s sont fournis, et le chercheur n&#8217;a pas acc\u00e8s aux identifiants personnels.<\/li>\n\n\n\n<li><strong>Surveillance continue :<\/strong> Le DAC et les administrateurs du registre surveillent l&#8217;utilisation des donn\u00e9es afin de s&#8217;assurer qu&#8217;elle est conforme aux conditions convenues. Les chercheurs doivent \u00e9galement mentionner le registre ILIAD dans toute publication ou tout rapport r\u00e9sultant de l&#8217;utilisation des donn\u00e9es.<\/li>\n<\/ol>\n\n\n\n<h3 class=\"wp-block-heading\">4.  \u00c0 qui appartiennent les donn\u00e9es ?<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">Les patients (ou leurs tuteurs l\u00e9gaux) sont les principaux propri\u00e9taires de leurs donn\u00e9es. Ils autorisent l&#8217;utilisation de leurs donn\u00e9es dans le registre par le biais d&#8217;un consentement \u00e9clair\u00e9.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">L&#8217;\u00e9tablissement de sant\u00e9 (HCP) qui h\u00e9berge le registre est le responsable du traitement des donn\u00e9es pour le registre ILIAD, charg\u00e9 de veiller \u00e0 la protection des donn\u00e9es et au respect des lois telles que le RGPD. \u00c0 Paris, le responsable du traitement des donn\u00e9es est l&#8217;Assistance Publique-H\u00f4pitaux de Paris (AP-HP). Une liste des responsables du traitement par HCP membre d\u2019ITHACA est disponible sur <a href=\"https:\/\/ern-ithaca.eu\/es\/our-research-activities\/iliad\/iliad-data-protection-officers\/\">cette page<\/a>.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">5. Comment la s\u00e9curit\u00e9 des donn\u00e9es est-elle assur\u00e9e ?<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">Le registre ILIAD prend tr\u00e8s au s\u00e9rieux la s\u00e9curit\u00e9 et la confidentialit\u00e9 des donn\u00e9es. Voici comment vos donn\u00e9es sont prot\u00e9g\u00e9es :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Pseudonymisation<\/strong> : tous les identifiants personnels sont supprim\u00e9s et remplac\u00e9s par des codes, de sorte que les individus ne peuvent pas \u00eatre identifi\u00e9s \u00e0 partir des donn\u00e9es.<\/li>\n\n\n\n<li><strong>Stockage s\u00e9curis\u00e9<\/strong> : les donn\u00e9es sont stock\u00e9es sur des serveurs crypt\u00e9s situ\u00e9s dans l&#8217;Union europ\u00e9enne, conform\u00e9ment au RGPD et aux autres lois sur la protection de la vie priv\u00e9e.<\/li>\n\n\n\n<li><strong>Contr\u00f4les d&#8217;acc\u00e8s<\/strong> : seuls les utilisateurs autoris\u00e9s peuvent acc\u00e9der aux donn\u00e9es, et leur acc\u00e8s est surveill\u00e9 et consign\u00e9.<\/li>\n\n\n\n<li><strong>Accords de transfert de donn\u00e9es<\/strong> : les chercheurs doivent accepter les conditions d&#8217;utilisation des donn\u00e9es.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\">Pourquoi est-ce important ?<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">Le processus d&#8217;acc\u00e8s aux donn\u00e9es du registre ILIAD garantit que les donn\u00e9es des patients sont utilis\u00e9es de mani\u00e8re responsable, \u00e9thique et s\u00e9curis\u00e9e. En suivant ces \u00e9tapes, le registre soutient la recherche tout en prot\u00e9geant la vie priv\u00e9e et les droits de chaque patient. Si vous avez des questions ou des pr\u00e9occupations concernant l&#8217;utilisation de vos donn\u00e9es, vous pouvez toujours contacter l&#8217;\u00e9quipe du registre ILIAD ou votre prestataire de soins de sant\u00e9 pour obtenir plus d&#8217;informations.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">D\u00e9claration de transparence du registre ILIAD<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Le registre ILIAD s&#8217;engage en faveur de la transparence, des droits des patients et de l&#8217;utilisation \u00e9thique des donn\u00e9es. En tant que participant ou parent\/repr\u00e9sentant l\u00e9gal d&#8217;un participant au registre ILIAD, vous avez le droit d&#8217;\u00eatre inform\u00e9 de la mani\u00e8re dont vos donn\u00e9es sont utilis\u00e9es et d&#8217;exercer un contr\u00f4le sur leur utilisation.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Vos droits<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Droit \u00e0 l&#8217;information<\/strong> : Vous avez le droit de savoir comment vos donn\u00e9es sont utilis\u00e9es. Sur cette page d\u00e9di\u00e9e au Portail de transparence, le registre ILIAD publiera les grandes lignes de tous les projets de recherche valid\u00e9s par le Comit\u00e9 d&#8217;acc\u00e8s aux donn\u00e9es pour l&#8217;utilisation des donn\u00e9es stock\u00e9es dans le registre. Ces grandes lignes seront disponibles sur notre Portail de transparence, afin que vous soyez inform\u00e9 de la finalit\u00e9, de la port\u00e9e et des objectifs de chaque \u00e9tude.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Droit de retrait<\/strong> : La participation au registre ILIAD est volontaire, et vous avez le droit de vous retirer du registre \u00e0 tout moment sans avoir \u00e0 fournir de motif. Si vous choisissez de vous retirer, vos donn\u00e9es ne seront plus utilis\u00e9es dans de nouveaux projets de recherche. Toutefois, les donn\u00e9es qui ont d\u00e9j\u00e0 \u00e9t\u00e9 trait\u00e9es pour des \u00e9tudes en cours ou achev\u00e9es peuvent encore \u00eatre conserv\u00e9es afin de garantir la validit\u00e9 de la recherche, conform\u00e9ment aux lois et aux directives \u00e9thiques applicables.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Droit de se retirer d&#8217;\u00e9tudes sp\u00e9cifiques<\/strong> : Si vous ne souhaitez pas que vos donn\u00e9es soient incluses dans un projet de recherche particulier, vous avez le droit de vous retirer de cette \u00e9tude sp\u00e9cifique. Les grandes lignes de tous les projets utilisant les donn\u00e9es ILIAD seront publi\u00e9es sur le Portail de transparence, ce qui vous permettra de les consulter et de d\u00e9cider si vous souhaitez que vos donn\u00e9es y soient incluses. Si vous choisissez de vous retirer d&#8217;une \u00e9tude sp\u00e9cifique, vos donn\u00e9es ne seront pas utilis\u00e9es pour ce projet.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Portail de transparence<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">Le portail de transparence ILIAD est con\u00e7u pour fournir des informations claires et accessibles sur tous les projets de recherche utilisant les donn\u00e9es du registre. Le portail comprendra :<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Les grandes lignes de chaque \u00e9tude, d\u00e9taillant les objectifs, la m\u00e9thodologie et les r\u00e9sultats attendus.<\/li>\n\n\n\n<li>Les coordonn\u00e9es des \u00e9quipes de recherche et de l&#8217;\u00e9quipe de coordination du registre ILIAD, que vous pouvez obtenir aupr\u00e8s de votre professionnel de sant\u00e9, vous permettant de poser des questions ou d&#8217;exprimer vos pr\u00e9occupations.<\/li>\n\n\n\n<li>Des m\u00e9canismes de d\u00e9sinscription, vous permettant d\u2019exclure vos donn\u00e9es de certaines \u00e9tudes sp\u00e9cifiques ou du registre dans son ensemble.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">Le Portail de transparence vous garantit de rester inform\u00e9 et de pouvoir prendre des d\u00e9cisions concernant l\u2019utilisation de vos donn\u00e9es. Il refl\u00e8te notre engagement en faveur de pratiques de recherche \u00e9thiques, de soins centr\u00e9s sur le patient et de la responsabilit\u00e9.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Comment exercer vos droits<\/h2>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Pour vous d\u00e9sinscrire du registre ILIAD ou d\u2019une \u00e9tude sp\u00e9cifique, veuillez contacter votre professionnel de sant\u00e9 traitant. Vous pouvez \u00e9galement contacter l&#8217;\u00e9quipe du registre ILIAD \u00e0 l&#8217;adresse <a href=\"mailto:coordination@ern-ithaca.eu\">protection.donnees.dsi@aphp.fr<\/a> (une autre adresse e-mail sera mise en place). Votre demande sera trait\u00e9e rapidement et vos pr\u00e9f\u00e9rences seront respect\u00e9es.<\/li>\n\n\n\n<li>Pour toute question concernant le Portail de transparence ou l&#8217;utilisation de vos donn\u00e9es, contactez l&#8217;\u00e9quipe du registre ILIAD.<\/li>\n\n\n\n<li>Tambi\u00e9n puede ejercer su derecho a presentar una reclamaci\u00f3n directamente ante la CNIL (para obtener m\u00e1s informaci\u00f3n al respecto, visite la p\u00e1gina web\u00a0<a href=\"http:\/\/www.cnil.fr\" target=\"_blank\" rel=\"noreferrer noopener\">www.cnil.fr<\/a>)<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">Le registre ILIAD s&#8217;engage \u00e0 prot\u00e9ger votre vie priv\u00e9e et \u00e0 garantir que vos donn\u00e9es sont utilis\u00e9es de mani\u00e8re responsable et \u00e9thique. Nous adh\u00e9rons \u00e0 des normes strictes en mati\u00e8re de protection des donn\u00e9es, notamment le RGPD, et accordons la priorit\u00e9 \u00e0 la transparence, au consentement et aux droits des patients dans toutes nos activit\u00e9s. En participant au registre ILIAD, vous contribuez \u00e0 faire progresser la recherche, le diagnostic et le traitement des troubles rares du d\u00e9veloppement et du d\u00e9veloppement neurologique, ce qui permettra \u00e0 terme d&#8217;am\u00e9liorer les soins prodigu\u00e9s aux patients comme vous et \u00e0 votre famille.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Merci de prendre part \u00e0 cette initiative importante. Votre confiance et votre participation sont inestimables pour nous.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">English version<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\"><\/p>\n\n\n\n<h2 class=\"wp-block-heading\">About the ILIAD Registry<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">The ILIAD Registry (<em>International Library of Intellectual Disability and Anomalies of Development<\/em>) is a European patient registry dedicated to advancing research, diagnosis, and care for individuals with rare (multiple) malformation syndromes and rare intellectual and other neurodevelopmental disorders of genetic, genomic, chromosomal, or environmental origin. Developed under the umbrella of the European Reference Network (ERN) ITHACA, ILIAD connects healthcare providers from University Hospitals (hereby designated as HCPs: <em>healthcare providers<\/em>) across the 27 EU member states and Norway, creating a secure and interoperable platform for collecting, storing, and analysing patient data.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The registry serves as a resource for healthcare professionals and researchers, enabling the study of rare diseases natural history, epidemiology and outcomes. By pooling data from diverse sources, ILIAD supports evidence-based management and clinical research, ultimately improving the quality of life for patients and their families. The registry adheres to strict data protection standards, including GDPR compliance, pseudonymization, and secure data storage, ensuring patient privacy and ethical data use.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The registry consists in a \u201ccore registry\u201d that includes general information, the clinical diagnosis and the genetic anomalies linked to the diagnosis. For some specific groups of patients, the registry may be extended by a subregistry, that includes more medical data for the patients with those conditions.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Governance<\/strong>: The registry is supervised by a scientific committee \u2013 the ILIAD steering committee \u2013 that supervises all requests to access the records. The steering committee is set up with persons involved in the governance of ERN ITHACA. It includes patient representatives from EU Patients Advocacy Organisations. Besides the general Steering committee, disease-specific Steering committees supervise the usage of each subregistry.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Why do we need a patient registry combining data from all over Europe?<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>To optimize care pathways : <\/strong>The rare diseases affect very few people in each country. European registries for rare diseases are a powerful tool to better understand how rare conditions evolve over time and how they affect the daily lives of patients and families. By bringing together information from many people living with the same or related conditions in different countries, they make it possible to follow the natural history of a disease over many years. This helps doctors and researchers to recognise early signs, monitor how symptoms change with age, and identify factors that may influence the course of the disease,. In turn, this knowledge is essential to improve care pathways, organise appropriate follow\u2011up, identify the most appropriate treatments and develop recommendations that are more closely adapted to patients\u2019 real needs.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>To increase knowlegde on rare disorders through medical research : <\/strong>These registries also make it much easier to reach patients and families who may be interested in taking part in medical research. When you agree that your data can be included, the registry can be used to identify people who match the criteria for a specific research project and to contact them in an organised and respectful manner, always in line with data protection and ethical rules. This is particularly important in rare diseases, where patients are few, often scattered across many centres, and difficult to find for researchers working on better diagnostic tools or treatments.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>To facilitate access to new, innovative treatments: <\/strong>Most importantly, European registries are a simple and efficient way to share information about new therapies and opportunities to participate in innovative therapeutic trials. They provide a channel through which validated, up\u2011to\u2011date information can reach patients and families more quickly, for example when a new treatment becomes available, when a study is opened, or when follow\u2011up recommendations change. By participating in such a registry, you not only contribute to advancing knowledge about your condition, but you also increase the chances that you and others with the same disease will be informed in time about research opportunities and potential new treatments.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">These are the reason why healthcare providers ask for their patients consent to include their data in the ILIAD registry to perform research in accordance with national and European data protection laws and ethics guidelines. Only the data required for such research will be recorded and may be shared with the registry authorised users. Your name, forename and full birthdate or address are not shared. You are identified in the registry only to a pseudonymized code. Your data privacy is secured following the ethical and legal requirements in force. Only your doctor will be able to link your pseudonymized data to you. This is important as we must be able to come back to you if research may have a direct benefice for your health, your follow up or to the access to therapeutic assays. Therefore, the risk of re-identification by unauthorized persons is minimal.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">How Data Access Works in the ILIAD Registry<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">The ILIAD Registry is a secure database that collects and stores information about patients with rare developmental and neurodevelopmental disorders. To ensure that data is used responsibly and ethically, the ILIAD Registry has a structured process for granting access to the information it holds. Here\u2019s how it works:<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">1. Who Can Access the Data?<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">The ILIAD Registry allows different groups of people to access its data, depending on their role and the type of data they need. These groups include:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Visitors<\/strong>: Anyone can visit the ILIAD Registry website and view general, non-identifiable summary information, such as the total number of patients in the registry or the number of patients with a specific condition. This data are aggregated (grouped together) and does not include any personal details.<\/li>\n\n\n\n<li><strong>Registered Users<\/strong>: Healthcare professionals (such as doctors or researchers) who work at hospitals or institutions that are part of the ERN ITHACA network (the ITHACA HCP members) can register to access more detailed, data, only within their own institution. These users must be validated and are typically affiliated with a healthcare provider within the network.<\/li>\n\n\n\n<li><strong>Active Registered Users<\/strong>: These are registered users whose institutions have contributed data for at least 50 patients in the last two years. They have access to more detailed, but still pseudonymized, (coded to protect identities), aggregated data within their own institution.<\/li>\n\n\n\n<li><strong>Authorized Users<\/strong>: Researchers or experts who are not part of the ERN ITHACA network but need access to data for specific research projects must apply for approval. Their requests are reviewed by the Data Access Committee (DAC), a group of experts that are members of the ILIAD Steering Committee, and includes healthcare professionals, patient representatives, and ethico-legal specialists. If approved, these users can access pseudonymized individual data or aggregated data, depending on the project\u2019s needs. There is a general DAC that evaluate all research requests. When request target one subregistry, the DAC request advice of the sub-registry specific Steering committee, including patient representatives of the subregistry-specific registry Steering committees.<\/li>\n\n\n\n<li><strong>Special Users<\/strong>: This group includes experts outside the ERN network, such as researchers from non-EU countries, patient organizations, or policymakers. Their access is evaluated on a case-by-case basis by the DAC and must align with the registry\u2019s goals.<\/li>\n\n\n\n<li><strong>Administrators<\/strong>: These are members of the DAC, project managers, and data managers who oversee the registry\u2019s operations, ensuring data is used correctly and securely.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\">2. What Data Can Be Accessed?<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">The ILIAD Registry contains different types of data, and access depends on the user\u2019s role and the purpose of their request:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Public Data<\/strong>: Available to everyone, this includes general statistics, such the total number of patients entered by country, the list of genes for which at least one patient is recorded, the number of patients carrying a specific gene mutation or diagnosis (if there as less than 5 patients, the number mentioned is \u201cless than 5\u201d). This data are anonymous and always aggregated, meaning they cannot be linked to any individual.<\/li>\n\n\n\n<li><strong>Restricted Data<\/strong>: This includes pseudonymized individual patient data, which are accessible only to authorized users (such as researchers or clinicians) after approval by the DAC. Pseudonymized data means that all personal identifiers (like names, forename, full birthdate or addresses) are not shared : patients are only identified by their pseudocode, so individuals cannot be directly identified.<\/li>\n\n\n\n<li><strong>Non-Anonymized Data<\/strong>: This type of data, which includes personal identifiers, is only accessible to authorized personnel within the healthcare provider where the data was originally collected. It is never shared outside of that institution.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\">3. How Is Access Granted?<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">To ensure that data is used ethically and responsibly, the ILIAD Registry follows a clear process for granting access:<\/p>\n\n\n\n<ol class=\"wp-block-list\">\n<li><strong>Request Submission<\/strong>: Researchers or experts who need access to data must fill out a Data Request Form, explaining the purpose of their project, the data they need, and how it will be used.<\/li>\n\n\n\n<li><strong>Review by the DAC<\/strong> and, if indicated, members of the registry-specific Steering Co: The DAC reviews each request to ensure it aligns with the registry\u2019s goals and ethical standards. They check:\n<ol style=\"list-style-type:lower-alpha\" class=\"wp-block-list\">\n<li>Whether the project is scientifically valid and likely to contribute to knowledge about rare diseases.<\/li>\n\n\n\n<li>Whether the requester is qualified to use the data.<\/li>\n\n\n\n<li>Whether there are any conflicts of interest or overlaps with other projects.<\/li>\n<\/ol>\n<\/li>\n\n\n\n<li><strong>Approval or Denial<\/strong>: The DAC provides feedback within 4 weeks of receiving a request. If approved, the requester must sign a Data Transfer Agreement, which outlines how the data can be used and ensures compliance with privacy laws (such as GDPR).<\/li>\n\n\n\n<li><strong>Data Sharing<\/strong>: Once approved, the requested data is shared with the researcher. For individual patient data, only pseudonymized records are provided, and the researcher is not given access to personal identifiers.<\/li>\n\n\n\n<li><strong>Ongoing Oversight<\/strong>: The DAC and registry administrators monitor data use to ensure it complies with the agreed terms. Researchers must also acknowledge the ILIAD Registry in any publications or reports that result from using the data.<\/li>\n<\/ol>\n\n\n\n<h3 class=\"wp-block-heading\">4. Who Owns the Data?<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">Patients (or their legal guardians) are the primary owners of their data. They grant permission for their data to be used in the registry through informed consent.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">The hospital (HCP) that host the registry is the data controller for the ILIAD Registry, responsible for overseeing data protection and compliance with laws like the GDPR. In Paris, the data controller is Assistance Publique-H\u00f4pitaux de Paris (AP-HP). A list of data controller per HCP is available in <a href=\"https:\/\/ern-ithaca.eu\/es\/our-research-activities\/iliad\/iliad-data-protection-officers\/\">esta p\u00e1gina<\/a>.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">5. How Is Data Kept Secure?<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">The ILIAD Registry takes data security and privacy seriously. Here\u2019s how your data is protected:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Pseudonymization<\/strong>: All personal identifiers are removed and replaced with codes, so individuals cannot be identified from the data.<\/li>\n\n\n\n<li><strong>Secure Storage<\/strong>: Data is stored on encrypted servers located in European Union, in compliance with GDPR and other privacy laws.<\/li>\n\n\n\n<li><strong>Access Controls<\/strong>: Only authorized users can access the data, and their access is monitored and logged.<\/li>\n\n\n\n<li><strong>Data Transfer Agreements<\/strong>: Researchers must agree to terms on how they can use the data.<\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\">Why This Matters<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">The ILIAD Registry\u2019s data access process ensures that patient data are used responsibly, ethically, and securely. By following these steps, the registry supports research while protecting the privacy and rights of every patient. If you have questions or concerns about how your data is used, you can always reach out to the ILIAD Registry team or your healthcare provider for more information.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">Transparency Statement for the ILIAD Registry<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">The ILIAD Registry is committed to transparency, patient rights, and ethical data use. As a participant or the parent\/legal representative of a participant in the ILIAD Registry, you have the right to be informed about how your data is used and to exercise control over its use.<\/p>\n\n\n\n<h3 class=\"wp-block-heading\">Your Rights<\/h3>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Right to Information<\/strong>: You have the right to know how your data are being used. In this page dedicated to the Transparency Portal, the ILIAD Registry will publish project outlines for all research studies that are validated by the Data Access Committee to make use of the data stored in the registry. The outlines will be available on our Transparency Portal, ensuring that you are informed about the purpose, scope, and objectives of each study.<\/li>\n\n\n\n<li><strong>Right to Opt-Out<\/strong>: Participation in the ILIAD Registry is voluntary, and you have the right to opt out of the registry at any time without providing a reason. If you choose to opt out, your data will no longer be used in new research projects. However, data that has already been processed for ongoing or completed studies may still be retained to ensure the validity of the research, in compliance with applicable laws and ethical guidelines.<\/li>\n\n\n\n<li><strong>Right to Opt-Out of Specific Studies<\/strong>: If you do not wish for your data to be included in a particular research project, you have the right to opt out of that specific study. The outlines of all projects using ILIAD data will be published on the Transparency Portal, allowing you to review and decide whether you want your data to be included. If you choose to opt out of a specific study, your data will not be used for that project.<\/li>\n<\/ul>\n\n\n\n<h3 class=\"wp-block-heading\">Transparency Portal<\/h3>\n\n\n\n<p class=\"wp-block-paragraph\">The ILIAD Transparency Portal is designed to provide clear and accessible information about all research projects that use data from the registry. The portal will include:<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Project outlines for each study, detailing the objectives, methodology, and expected outcomes.<\/li>\n\n\n\n<li>Contact information for the research teams and the ILIAD Registry coordination team from yor HCP, allowing you to ask questions or express concerns.<\/li>\n\n\n\n<li>Opt-out mechanisms, enabling you to exclude your data from specific studies or the registry entirely.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">The Transparency Portal ensures that you remain informed and empowered to make decisions about the use of your data. It reflects our commitment to ethical research practices, patient-centered care, and accountability.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\">How to Exercise Your Rights<\/h2>\n\n\n\n<ul class=\"wp-block-list\">\n<li>To opt out of the ILIAD Registry or a specific study, please contact your primary healthcare provider. You can also contact the ILIAD Registry team at <a href=\"mailto:coordination@ern-ithaca.eu\">coordination@ern-ithaca.eu<\/a> (different email to be put in place). Your request will be processed promptly, and your preferences will be respected.<\/li>\n\n\n\n<li>For questions about the Transparency Portal or the use of your data contact the ILIAD Registry team.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">The ILIAD Registry is dedicated to protecting your privacy and ensuring that your data is used responsibly and ethically. We adhere to strict data protection standards, including the GDPR and prioritize transparency, consent, and patient rights in all our activities. By participating in the ILIAD Registry, you contribute to advancing research, diagnosis, and treatment for rare developmental and neurodevelopmental disorders, ultimately improving care for patients like you and your family.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Thank you for being a part of this important initiative. 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