{"doc_desc":{"title":"Creation of a French national database of rare dermatological cancers: Merkel Carcinoma Cohort","idno":"FRESH-PEF73397-en","producers":[{"name":"Beno\u00eet MINART","affiliation":"CENTRE HOSPITALIER UNIVERSITAIRE DE LILLE (CHU)"}]},"study_desc":{"title_statement":{"idno":"FRESH-PEF73397-en","IDno":{"metadata_no":[{"agency":"PEF","code":"73397"},{"agency":"FReSH","code":"FRESH-PEF73397"}]},"title":"Creation of a French national database of rare dermatological cancers: Merkel Carcinoma Cohort","alternate_title":"CARADERM"},"study_authorization":{"agency":[]},"authoring_entity":[{"type":"investigator","name":"Laurent;MORTIER","PILabo":"CHRU de Lille","affiliationName":"CENTRE HOSPITALIER UNIVERSITAIRE DE LILLE (CHU)","extlink":[{"title":"ORCID","uri":"0000-0002-2644-1790","role":"pi id"},{"title":"IdRef","uri":"073412295","role":"pi id"},{"title":"SIREN","uri":"265906719","role":"organisation id"},{"title":"","uri":"","role":"labo id"}],"email":"laurent.mortier@chru-lille.fr","isContact":"Yes"}],"oth_id":[{"name":""}],"production_statement":{"prod_place":"Epidemiology France Portal (PEF)","producers":[{"name":"CENTRE HOSPITALIER UNIVERSITAIRE DE LILLE (CHU)","extlink":[{"title":"ROR","uri":"https:\/\/ror.org\/02ppyfa04","role":"sponsor id"},{"title":"SIREN","uri":"265906719","role":"sponsor id"}],"role":"sponsor"}],"funding_agencies":[{"name":""}]},"distribution_statement":{"contact":[{"name":"Astrid;BLOM","email":"astrid.blom@aphp.fr","type":"contact","affiliationName":"ASSISTANCE PUBLIQUE HOPITAUX DE PARIS (AP-HP)","contactPointLabo":"","extlink":[{"uri":"https:\/\/ror.org\/00pg5jh14","role":"organisation id","title":"ROR"},{"uri":"267500452","role":"organisation id","title":"SIREN"}]},{"name":"Philippe;SAIAG","email":"philippe.saiag@uvsq.fr","type":"contact","affiliationName":"ASSISTANCE PUBLIQUE HOPITAUX DE PARIS (AP-HP)","contactPointLabo":"","extlink":[{"uri":"https:\/\/ror.org\/00pg5jh14","role":"organisation id","title":"ROR"},{"uri":"267500452","role":"organisation id","title":"SIREN"}]},{"name":"Laurent;MORTIER","email":"laurent.mortier@chru-lille.fr","type":"contact","affiliationName":"CENTRE HOSPITALIER UNIVERSITAIRE DE LILLE (CHU)","contactPointLabo":"","extlink":[{"uri":"https:\/\/ror.org\/02ppyfa04","role":"organisation id","title":"ROR"},{"uri":"265906719","role":"organisation id","title":"SIREN"}]}]},"study_info":{"keywords":[{"keyword":"Merkel carcinoma"},{"keyword":"basic and translational research"},{"keyword":"network"},{"keyword":"cohort"},{"keyword":"epidemiology"},{"keyword":"pre-clinical to phase III"},{"keyword":"national, European and international bodies"}],"topics":[{"topic":"Oncology","vocab":"health theme","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/5784b7f1-c7ce-49d9-9f38-aebcda0ff41d"},{"title":"MeSH","uri":"http:\/\/id.nlm.nih.gov\/mesh\/D008495"}]},{"topic":"Dermatology","vocab":"health theme","extLink":[{"title":"ESV","uri":"http:\/\/data.europa.eu\/8mn\/euroscivoc\/5375c411-6db9-40ed-a854-6554102a587b"},{"title":"MeSH","uri":"http:\/\/id.nlm.nih.gov\/mesh\/D003880"}]},{"topic":"Neoplasms","vocab":"cim-11","extLink":[{"uri":"http:\/\/id.who.int\/icd\/entity\/1630407678","title":"CIM-11"}]}],"purpose":"Main objective Establishment of a clinico-histological database for Merkel carcinomas Secondary objectives 1. To provide an annual dashboard of patients' clinical follow-up, enabling this cohort to: - carry out descriptive epidemiological analyses and correlation studies throughout France. - identify and validate new clinical prognostic factors, - assess the benefit-risk of authorized and pending treatments for rare skin cancers 2. Ensure RCP (multidisciplinary consultation meeting) management discussions for all patients with one of these rare cancers nationwide, within the framework of one of the regional RCPs. If necessary, organize a national referral RCP 4. Draw up and update national recommendations for good clinical practice 5. Structure clinical and fundamental research into rare cutaneous cancers, by encouraging the inclusion of rare cutaneous cancer patients in therapeutic trials of new drugs. ; 6. Organize training for caregivers (medical and paramedical) and patient information at regional or inter-regional level.","abstract":"","coll_dates":[{"start":"2014-01-01","end":"2018-01-01"}],"nation":[{"name":"France","abbreviation":"fr","extLink":{"vocab":"ISO","vocabURI":"fr"}}],"geog_coverage":"","analysis_unit":"Individuals","universe":"{\n    \"level_sex_clusion_I\": [\n        {\n            \"value\": \"Male\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D008297\"\n            }\n        },\n        {\n            \"value\": \"Female\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n                \"vocabURI\": \"http:\\\/\\\/id.nlm.nih.gov\\\/mesh\\\/D005260\"\n            }\n        }\n    ],\n    \"level_age_clusion_I\": [\n        {\n            \"value\": \"Young Adult (19 to 24 years)\",\n            \"concept\": {\n                \"vocab\": \"MeSH\",\n      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