{"doc_desc":{"title":"GenIDA: International participatory platform for research into genetic forms of intellectual development disorders, with or without autism and epilepsy.","idno":"FReSH-43671-en","producers":[{"name":"Sonia GUEGUEN","affiliation":""}]},"study_desc":{"title_statement":{"idno":"FReSH-43671-en","IDno":{"metadata_no":[{"agency":"ClinicalTrials.gov ID","code":"NCT06871696"}],"metadata_yes":[{"code":"FReSH","agency":"FReSH"}]},"title":"GenIDA: International participatory platform for research into genetic forms of intellectual development disorders, with or without autism and epilepsy.","alternate_title":"GenIDA"},"study_authorization":{"agency":[{"name":"CNIL"},{"name":"Other"}]},"authoring_entity":[{"name":"Jean-Louis;MANDEL","firstname":"Jean-Louis","lastname":"MANDEL","type":"investigator","extlink":[{"title":"ORCID","uri":"0000-0002-0535-6589","role":"pi id"},{"title":"IdRef","uri":"","role":"pi id"},{"title":"RNSR","uri":"200112491C","role":"labo id"}],"email":"jlmandel@igbmc.fr","affiliationName":"Institut de g\u00e9n\u00e9tique et biologie mol\u00e9culaire et cellulaire (IGBMC)","PILabo":"University of Strasbourg, CNRS UMR 7104 - Inserm U 1258","isContact":true}],"oth_id":[{"name":"GenIDA promotes data sharing and scientific collaboration. We work closely with researchers, healthcare professionals, and family organizations in several countries. These collaborations span various medical fields and the different rare diseases studied by GenIDA. They enable the development of joint research projects as well as the sharing of clinical and behavioral data, knowledge, and expertise among the various partners.\n\nGenIDA\u2019s network of collaborators includes, among others, David Koolen, MD, PhD (NL); Charlotte Ockeloen, MD, PhD (NL); Amelie Piton, MCU-PH (FR) ; Anne de Saint Martin, MD, PhD (FR); Ines Fernandes Ulibarri, PhD, co-founder of the Kleefstra Espa\u00f1a association (ES); Thomas Smol, MD, PhD (FR); Angela Morgan, PhD (AU); Tanja Zdolsek Draksler, PhD, family representative and mother of a child with Kleefstra syndrome (SLO)...","type":"collaboration"}],"production_statement":{"prod_place":"France Recherche en Sant\u00e9 Humaine (FReSH)","producers":[{"name":"INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE (INSERM)","role":"sponsor","extlink":[{"title":"SIREN","uri":"180036048","role":"sponsor id"},{"title":"ROR","uri":"https:\/\/ror.org\/02vjkv261","role":"sponsor id"}]}],"funding_agencies":[{"name":"UNIVERSITE DE STRASBOURG","extlink":[{"title":"SIREN","uri":"130005457"},{"title":"ROR","uri":"https:\/\/ror.org\/00pg6eq24"}]},{"name":"Fondation J\u00e9r\u00f4me Lejeune"},{"name":"Roche Pharma France"},{"name":"GIS autisme et troubles du neurod\u00e9veloppement"},{"name":"Stras&ND"}]},"distribution_statement":{"contact":[{"name":"Jean-Louis;MANDEL","lastname":"MANDEL","firstname":"Jean-Louis","type":"contact","email":"jlmandel@igbmc.fr","affiliationName":"Institut de g\u00e9n\u00e9tique et biologie mol\u00e9culaire et cellulaire (IGBMC)","contactPointLabo":"University of Strasbourg, CNRS UMR 7104 - Inserm U 1258","extlink":[{"title":"","uri":"","role":"organisation id"},{"title":"RNSR","uri":"200112491C","role":"labo id"}]},{"name":"Mar\u00eda Victoria;HINCKELMANN","lastname":"HINCKELMANN","firstname":"Mar\u00eda Victoria","type":"contact","email":"genida@igbmc.fr","affiliationName":"Institut de g\u00e9n\u00e9tique et biologie mol\u00e9culaire et cellulaire (IGBMC)","contactPointLabo":"University of Strasbourg, CNRS UMR 7104 - Inserm U 1258","extlink":[{"title":"","uri":"","role":"organisation id"},{"title":"RNSR","uri":"200112491C","role":"labo id"}]}]},"study_info":{"keywords":[{"keyword":"Genetic disease"},{"keyword":"Rare disease"},{"keyword":"Intellectual disability"},{"keyword":"Natural History"},{"keyword":"Comorbidity"},{"keyword":"Participatory research"},{"keyword":"Autism"},{"keyword":"ASD"},{"keyword":"IDD"},{"keyword":"Epilepsy"}],"topics":[{"topic":"Cardiology and vascular medicine","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/4455c187-2f2f-4cd1-a4dd-449f59d73b39 | http:\/\/data.europa.eu\/8mn\/euroscivoc\/c42fc6ec-b216-4a24-9e9d-f5e781c175a0"},{"title":"MeSH","uri":"D002309"}],"vocab":"health theme"},{"topic":"Clinical immunology","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/7a3cf568-46ba-4840-be8f-f22fc030139f"},{"title":"MeSH","uri":"D000486"}],"vocab":"health theme"},{"topic":"Dentistry","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/5754a839-d714-4849-9789-e831eb4af6f1"},{"title":"MeSH","uri":"D003813"}],"vocab":"health theme"},{"topic":"Dermatology","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/5375c411-6db9-40ed-a854-6554102a587b"},{"title":"MeSH","uri":"D003880"}],"vocab":"health theme"},{"topic":"Endocrinology","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/d1dd1bac-5313-4ab3-837f-4acd3ec521a7"},{"title":"MeSH","uri":"D004704"}],"vocab":"health theme"},{"topic":"Gastroenterology","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/a3898340-a42d-4f5e-a822-1de204a9a867"},{"title":"MeSH","uri":"D005762"}],"vocab":"health theme"},{"topic":"Hematology","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/9239f328-78c9-40a5-a0b9-8e66fd9b6245"},{"title":"MeSH","uri":"D006402"}],"vocab":"health theme"},{"topic":"Hepatology","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/27c456a1-051a-42f6-b52a-3beff0487da7"},{"title":"MeSH","uri":""}],"vocab":"health theme"},{"topic":"Infectious disease medicine","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/fa2ceeab-3b2f-45e9-9243-e5a8005b98de"},{"title":"MeSH","uri":"D055552"}],"vocab":"health theme"},{"topic":"Medical genetics","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/8e2d297f-5880-4d7a-969d-79026aa0779c"},{"title":"MeSH","uri":"D005823"}],"vocab":"health theme"},{"topic":"Nephrology","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/3961e9d2-ab3b-451b-b246-20fc0ec3b0c4"},{"title":"MeSH","uri":"D009398"}],"vocab":"health theme"},{"topic":"Neurology","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/c4793dfe-e80e-49dd-9fcc-a1a742de1b25 | http:\/\/data.europa.eu\/8mn\/euroscivoc\/00a5c4f4-b7ee-41a4-bcdf-3a02e6be1660"},{"title":"MeSH","uri":"D009462"}],"vocab":"health theme"},{"topic":"Nutrition and dietetics","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/71cd7e43-dbf6-420f-8338-b444439e4e41 | http:\/\/data.europa.eu\/8mn\/euroscivoc\/8190a2e4-d944-4a7e-bb2f-adb488442622"},{"title":"MeSH","uri":"D052756"}],"vocab":"health theme"},{"topic":"Oncology","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/5784b7f1-c7ce-49d9-9f38-aebcda0ff41d"},{"title":"MeSH","uri":"D008495"}],"vocab":"health theme"},{"topic":"Ophthalmology","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/621ef1ce-2ebd-43d9-a6c7-ecd962d27269"},{"title":"MeSH","uri":"D009885"}],"vocab":"health theme"},{"topic":"Orthopaedics and traumatology","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/c4538836-ae58-4941-b544-50f53e979e20"},{"title":"MeSH","uri":"D009985 | D014194"}],"vocab":"health theme"},{"topic":"Otolaryngology","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/9c3a57c5-68bd-4ee7-a9cc-aa8ba07bde94"},{"title":"MeSH","uri":"D010036"}],"vocab":"health theme"},{"topic":"Paediatrics","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/bf8aaaac-ddee-41cd-bb8a-c5a63de3fcbd"},{"title":"MeSH","uri":"D010372"}],"vocab":"health theme"},{"topic":"Psychiatry","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/3de50dee-da1c-4791-a386-56bca24a5fed"},{"title":"MeSH","uri":"D011570"}],"vocab":"health theme"},{"topic":"Pulmonary medicine","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/f6e18c52-6087-4662-904c-5c4b8174e40e"},{"title":"MeSH","uri":"D015272"}],"vocab":"health theme"},{"topic":"Rheumatology","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/bfb0bafd-7894-45ba-84fc-ddab5fd6c537"},{"title":"MeSH","uri":"D012219"}],"vocab":"health theme"},{"topic":"Disorders of intellectual development","vocab":"cim-11","extLink":[{"title":"CIM-11","uri":"http:\/\/id.who.int\/icd\/entity\/605267007"}]}],"purpose":"The primary objective of this study is to characterize\u2014based on data collected from the GenIDA database\u2014the clinical, medical, cognitive, and behavioral manifestations, as well as the natural history, of genetic forms of intellectual disability with or without autism and epilepsy.\r\nMore specifically, this study aims to:\r\no  establish and expand international cohorts of patients with a specific genetic abnormality;\r\no  describe the phenotypic spectrum associated with each of these genetic abnormalities;\r\no  identify the frequency and variety of associated comorbidities\r\no  to study changes in clinical manifestations and cognitive and behavioral abilities over time, through longitudinal data collection;\r\no  to highlight manifestations that may be underestimated or have not yet been described;\r\no  to help improve the medical care and follow-up for affected individuals by generating data that is useful to families, clinicians, geneticists, and other healthcare professionals.\r\nThe overall goal is therefore to transform the collaborative collection of data by families into new and medically significant insights regarding rare genetic neurodevelopmental disorders.","abstract":"Intellectual disability (ID) affects approximately 2\u20133% of the population. More than half of these cases are believed to be linked to a genetic cause, such as a gene mutation, a chromosomal abnormality, or a copy number variation (CNV). Advances in high-throughput sequencing have made it possible to identify more than 1,800 recurrent genes involved in these forms of ID\/autism. Despite these advances, for many of these syndromes, clinical, behavioral, medical, and natural history data remain very limited due to their rarity and the small number of affected patients.\r\nIt was against this backdrop that GenIDA was created\u2014an international, participatory database aimed at improving our understanding of these genetic forms of ID. It enables the standardized, longitudinal collection of information on the clinical manifestations and comorbidities of individuals with a genetic form of ID and\/or ASD.  Data are primarily provided by families through a structured questionnaire available in 10 languages. This participatory and multilingual approach facilitates the engagement of families around the world, thereby promoting recruitment.\r\nAnalysis of this data makes it possible to group patients into gene- or syndrome-based cohorts of sufficient size to better describe the various profiles associated with each genetic abnormality. In particular, it allows for the study of the frequency of clinical manifestations and comorbidities, as well as their age of onset, severity, and progression over time.","coll_dates":[{"start":"2016-07-15"}],"nation":[{"name":"France","abbreviation":"fr","extLink":{"vocab":"ISO","vocabURI":"fr"}},{"name":"Australia","abbreviation":"au","extLink":{"vocab":"ISO","vocabURI":"au"}},{"name":"Canada","abbreviation":"ca","extLink":{"vocab":"ISO","vocabURI":"ca"}},{"name":"Germany","abbreviation":"de","extLink":{"vocab":"ISO","vocabURI":"de"}},{"name":"Netherlands","abbreviation":"nl","extLink":{"vocab":"ISO","vocabURI":"nl"}},{"name":"Spain","abbreviation":"es","extLink":{"vocab":"ISO","vocabURI":"es"}},{"name":"United kingdom","abbreviation":"gb","extLink":{"vocab":"ISO","vocabURI":"gb"}},{"name":"United states","abbreviation":"us","extLink":{"vocab":"ISO","vocabURI":"us"}}],"geog_coverage":"['Auvergne Rh\u00f4ne-Alpes','Bourgogne Franche-Comt\u00e9','Bretagne','Centre-Val de Loire','Corse','Grand Est','Guadeloupe','Guyane','Hauts-de-France','Ile-de-France','La R\u00e9union','Martinique','Mayotte','Normandie','Nouvelle-Aquitaine','Occitanie','Pays de la Loire','Provence - Alpes - C\u00f4te d'Azur']","analysis_unit":"Individus","universe":"{\n    \"level_sex_clusion_I\": [\n        {\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"D005260\"\n            },\n            \"value\": \"Female\"\n        },\n        {\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"D008297\"\n            },\n            \"value\": \"Male\"\n        },\n        {\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"\"\n            },\n            \"value\": \"Other\"\n        }\n    ],\n    \"level_age_clusion_I\": [\n        {\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"D007231\"\n            },\n            \"value\": \"Infant, Newborn (birth to 28 days)\"\n        },\n        {\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"D007223\"\n            },\n            \"value\": \"Infant (28 days to 2 years)\"\n        },\n        {\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"D002675\"\n            },\n            \"value\": \"Child, Preschool (2 to 5 years)\"\n        },\n        {\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"D002648\"\n            },\n            \"value\": \"Child (6 to 12 years)\"\n        },\n        {\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"D000293\"\n            },\n            \"value\": \"Adolescent (13 to 18 years)\"\n        },\n        {\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"D055815\"\n            },\n            \"value\": \"Young Adult (19 to 24 years)\"\n        },\n        {\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"D000328\"\n            },\n            \"value\": \"Adult (25 to 44 years)\"\n        },\n        {\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"D008875\"\n            },\n            \"value\": \"Middle Aged (45 to 64 years)\"\n        },\n        {\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"D000368\"\n            },\n            \"value\": \"Aged (65 to 79 years)\"\n        },\n        {\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"D000369\"\n            },\n            \"value\": \"Aged, 80 and over (80 years and more)\"\n        }\n    ],\n    \"level_type_clusion_I\": \"Patients population\",\n    \"level_type_clusion_other\": \"\",\n    \"clusion_I\": \"There are two inclusion criteria that must be met in order to be included in the study:\\r\\n\u2022  Have a neurodevelopmental disorder, with or without autism and\\\/or epilepsy\\r\\n\u2022  Have been diagnosed as a carrier of a genetic abnormality responsible for this disorder\",\n    \"clusion_E\": \"There are two exclusion criteria, which are:\\r\\n\u2022  To have a genetic abnormality classified as a \u201cvariant of uncertain significance\u201d (VUS)\\r\\n\u2022  The absence of an established genetic diagnosis to explain the neurodevelopmental disorder.\"\n}","data_kind":"['Participant-reported health data']","quality_statement":{"standards":[{"name":"","committee":"GenIDA\u2019s Scientific Advisory Board is composed of about 20 internationally recognized physicians and researchers from several countries with expertise in genetically caused neurodevelopmental disorders, as well as representatives from patient and family organizations. Its exact composition may change from year to year, depending in particular on the availability and commitment of its members.","governance":""}],"other_quality_statement":""}},"study_development":{"development_activity":[{"activity_type":"primary evaluation","activity_description":"Frequency and characteristics of the clinical, medical, cognitive, and behavioral manifestations reported in patients included in the various GenIDA cohorts. These manifestations are assessed based on their age of onset, their course, and, where relevant, their severity."},{"activity_type":"secondary evaluation","activity_description":""}]},"method":{"data_collection":{"time_method":"Retrospective longitudinal","frequency":"Ongoing data collection. Families and loved ones can enter data at any time, on their own, through the GenIDA platform, which is available 24\/7.","sampling_procedure":"['{\"concept\":{\"vocab\":\"CESSDA\",\"vocabURI\":\"Nonprobability\"},\"value\":\"Non-probability\"}','{\"concept\":{\"vocab\":\"CESSDA\",\"vocabURI\":\"Nonprobability.Availability\"},\"value\":\"Non-probability: Availability (convenience or opportunity sampling)\"}','{\"concept\":{\"vocab\":\"CESSDA\",\"vocabURI\":\"Other\"},\"value\":\"Other\"}']","sample_frame":{"frame_unit":{"unit_type":"['Other']"}},"coll_mode":["{\"concept\":{\"vocab\":\"CESSDA\",\"vocabURI\":\"SelfAdministeredQuestionnaire\"},\"value\":\"Self-administered questionnaire\"}"],"research_instrument":"Aggregated and anonymized data are available to participants and healthcare professionals registered on GenIDA.","sources":[{"sourceCitation":{"titlStmt":{"titl":""},"holdings":"","notes":{"subject":"source purpose","value":""}},"srcOrig":[]}],"target_sample_size":"[1000-10000[ individuals","response_rate":"2524 participants"},"method_notes":"Observational Study","study_class":"Ongoing study","notes":[{"subject":"research type","values":["Observational Study"]},{"subject":"observational study method","values":["Cohort study"]},{"subject":"follow-up","values":["Other"]}]},"data_access":{"dataset_availability":{"access_place":"","complete":"","status":"{\"extLink\":{\"title\":\"COAR\",\"uri\":\"http:\/\/purl.org\/coar\/access_right\/c_16ec\"},\"value\":\"Restricted access\"}","notes":""},"dataset_use":{"restrictions":"The data may be used for scientific research purposes, in accordance with GenIDA\u2019s \u201cUser Data Charter.\u201d","conditions":"The data may be used for scientific research purposes, in accordance with GenIDA\u2019s \u201cUser Data Charter.\u201d","conf_dec":[{"txt":""}],"spec_perm":[{"txt":"https:\/\/genida.eu\/home. Aggregated and anonymized data are directly accessible on the GenIDA website. They are available to participants after they have completed their online questionnaire, and to professionals after their registration has been approved. Access to anonymized individual data requires a specific request, submitted via the GenIDA website or by email, and is subject to approval.","required":"Yes"}],"contact":[{"name":"Victoria;HINCKELMANN","firstname":"Victoria","lastname":"HINCKELMANN","email":"genida@igbmc.fr"},{"name":"Jean-Louis;MANDEL","firstname":"Jean-Louis","lastname":"MANDEL","email":"jlmandel@igbmc.fr"}],"deposit_req":"Any use of the data must be reported to GenIDA prior to its use. Users are encouraged to contact GenIDA when preparing research projects or scientific articles to clarify the terms of collaboration and how GenIDA should be credited.","cit_req":"Any scientific publication, presentation, or communication that uses data or results from GenIDA must cite GenIDA. The guidelines for citing and crediting GenIDA must be determined in consultation with the GenIDA team."}}},"additional":{"versionLang":"en","originLang":"en","lastUpdatedAuto":"05-10-2026","lastUpdatedManual":"05-10-2026","autoTranslation":false,"status":"Published","respValidation":"","isHealthTheme":true,"isContributorPI":false,"addTeamMember":false,"primaryInvestigator":{"isPIContact":true,"piMail":"jlmandel@igbmc.fr","piAffiliation":{"piLabo":"University of Strasbourg, CNRS UMR 7104 - Inserm U 1258"}},"relatedDocument":[{"type":"Publication resulting from the study and presenting research findings (articles, posters, reports, books or chapters, etc.)","title":"List of Recommendations for Management and Follow-Up","link":"https:\/\/genida.eu\/articles\/papers"},{"type":"Publication defining the database and\/or its collection protocol  (data paper, cohort profile, method\/protocol paper, resource paper, data note, registered report...)","title":"List of guides for families and links to documents","link":"https:\/\/genida.eu\/articles\/guides-for-families"}],"contactPointLabo":"University of Strasbourg, CNRS UMR 7104 - Inserm U 1258","obtainedAuthorization":{"otherAuthorizingAgency":["","INSERM"]},"regulatoryRequirements":{"conformityDeclaration":""},"fundingAgent":{"fundingAgentType":["Public (France)","Private non-profit","Industry","Public (France)","Public (Europe)"],"otherFundingAgentType":["","","","",""]},"sponsor":{"sponsorType":["Public (France)"],"otherSponsorType":[""]},"governance":{"committee":true},"collaborations":{"networkConsortium":true},"theme":{"complementaryInformation":"","RareDiseases":true},"interventionalStudy":{"researchPurpose":[],"trialPhase":[],"interventionalStudyModel":"","isClinicalTrial":"","otherResearchPurpose":""},"isInclusionGroups":true,"allocation":{"allocationMode":"","allocationUnit":""},"masking":{"maskingType":"","blindedMaskingDetails":[]},"arms":[],"intervention":[{"name":"GenIDA collects data on the physical, medical, behavioral, and cognitive characteristics of neurodevelopmental disorders of genetic origin.","type":"Other","typeOther":"Collection of clinical data from patients as part of their routine care, without any specific factors or exposures."}],"cohortLongitudinal":{"recrutementTiming":[]},"otherResearchType":{"otherResearchTypeDetails":""},"inclusionGroups":[],"nrInclusionGroups":false,"collectionProcess":{"collectionModeDetails":"Families and loved ones can enter the information at any time, on their own, through the GenIDA platform, which is available 24\/7.","collectionModeOther":""},"dataCollection":{"inclusionStrategy":[],"samplingModeOther":"","recruitmentSourceOther":"Recruitment is carried out through patient and family organizations, healthcare professionals, and GenIDA\u2019s networks, as well as through its communication and outreach efforts.","otherDocumentation":""},"activeFollowUp":{"isActiveFollowUp":true,"followUpModeOther":"Follow-up with participants via phone or email, on an ad hoc basis. This follow-up will depend on each individual case and the needs of the ongoing scientific project."},"dataCollectionIntegration":{"isDataIntegration":false},"geographicalCoverage":{"geoDetail":"The list of countries is not exhaustive. The international nature of the project allows for the inclusion of participants and\/or data from various countries and territories, without any specific geographic restrictions."},"dataTypes":{"clinicalDataDetails":"","biologicalDataDetails":"","biobankContent":[],"biobankContentOther":"","dataTypeOther":"","paraclinicalDataOther":"","otherLiquidsDetails":""},"variableDictionnary":{"variableDictionnaryAvailable":false,"variableDictionnaryLink":""},"dataQuality":{"otherDocumentation":""},"mockSample":{"mockSampleAvailable":false,"mockSampleLocation":""},"thirdPartySource":{"otherSourceType":[""]},"fileDscr":{"fileTxt":{"fileCitation":{"titlStmt":{"IDno":[]}}}}},"schematype":"survey"}