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The GRDR® Registry Model Common Data Elements (CDEs) - The GRDR® Registry Model Common Data Elements (CDEs)

- 02.12.15 - 1 Formular, 10 Itemgruppen, 76 Datenelemente, 1 Sprache
Itemgruppen: Current Contact Information, Socio-Demographic, Diagnosis, Family History, Anthropometric, Patient reported outcome, Devices and Health services, Clinical Research Participation and Biospecimen, Contact and Communication Preferences, Administrative
The main goals of the GRDR (Global Rare Diseases Patient Registry and Data Repository) CDE (Common Data Elements) effort are to: 1) develop a set of CDEs to facilitate data collection for the GRDR in a standardized and meaningful manner; 2) assist organizations that have no patient registry to establish a registry and be able to share data with the GRDR or other databases; 3) facilitate harmonization among the many organizations collecting patient information. NIH has developed Model Registry CDEs (ORDR CDEs) for patient data entry to be used in any rare disease registry, including a subset of CDEs (GRDR CDEs) to collect only de-identified information for the GRDR data repository. ODM derived from: https://ncats.nih.gov/grdr Permission to publish granted by Yaffa Rubinstein.

EUROPEAN PLATFORM ON RARE DISEASE REGISTRATION (EU RD Platform / ERDRI Common Data Set) - SET OF COMMON DATA ELEMENTS FOR RARE DISEASES REGISTRATION

- 05.07.22 - 1 Formular, 8 Itemgruppen, 37 Datenelemente, 22 Sprachen
Itemgruppen: Pseudonym, Personal information, Patient status, Care pathway, Disease history, Diagnosis, Research, Disability
EUROPEAN PLATFORM ON RARE DISEASEREGISTRATION(EU RD Platform): https://eu-rd-platform.jrc.ec.europa.eu/set-of-common-data-elements_en Description taken from the above website (17.02.2021): "The "Set of common data elements for Rare Diseases Registration" is the first practical instrument released by the EU RD Platform aiming at increasing interoperability of RD registries. It contains 16 data elements to be registered by each rare disease registry across Europe, which are considered to be essential for further research. They refer to patient's personal data, diagnosis, disease history and care pathway, information for research purposes and about disability. The "Set of common data elements for Rare Diseases Registration" was produced by a Working Group coordinated by the JRC and composed of experts from EU projects which worked on common data sets: EUCERD Joint Action, EPIRARE and RD-Connect." (For this version some implied additional data elements have been added, e.g. date of onset/diagnosis; data elements identified as multiple answer have been split to several boolean data elements. For "Diagnosis"-data elements additionally the actual diagnosis-code variable has been added) EUROPEAN COMMISSION JOINT RESEARCH CENTRE Directorate F –Health, Consumers and Reference Materials UnitF.1 –Health in Society Title in the other languages: български: ЕВРОПЕЙСКА ПЛАТФОРМА ЗА РЕГИСТРАЦИЯ НА РЕДКИТЕ ЗАБОЛЯВАНИЯ (Платформа на ЕС за РЗ): НАБОР ОТ ОБЩИ ИНФОРМАЦИОННИ ЕЛЕМЕНТИ ЗА РЕГИСТРАЦИЯ НА РЕДКИТЕ ЗАБОЛЯВАНИЯ Dansk: EUROPÆISK PLATFORM FOR REGISTRERING AF SJÆLDNE SYGDOMME (EU RD-platformen): FÆLLES DATAELEMENTER FOR REGISTRERING AF SJÆLDNE SYGDOMME Deutsch: EUROPÄISCHE PLATTFORM FÜR DIE REGISTRIERUNG SELTENER KRANKHEITEN (EU-SK-Plattform): (Titel fehlt) ελληνικά: ΕΥΡΩΠΑΪΚΗ ΠΛΑΤΦΟΡΜΑ ΓΙΑ ΤΗΝ ΚΑΤΑΧΩΡΙΣΗ ΣΠΑΝΙΩΝ NΟΣΩΝ (Πλατφόρμα της ΕΕ για τις ΣΝ): ΣΥΝΟΛΟ ΚΟΙΝΩΝ ΣΤΟΙΧΕΙΩΝ ΔΕΔΟΜΕΝΩΝ ΓΙΑ ΤΗΝ ΚΑΤΑΧΩΡΙΣΗ ΣΠΑΝΙΩΝ ΝΟΣΩΝ Español: PLATAFORMA EUROPEA PARA EL REGISTRO DE ENFERMEDADES RARAS: DE ENFERMEDADES RARAS Eesti: HARVIKHAIGUSTE REGISTREERIMISE EUROOPA PLATVORM (EU RD Platform): HARVIKHAIGUSTE REGISTREERIMISE ÜHISTE ANDMEELEMENTIDE KOGUM Suomi: HARVINAISSAIRAUKSIEN REKISTERÖINNIN EUROOPPALAINEN FOORUMI: YHTEISET DATAELEMENTIT HARVINAISSAIRAUKSIEN REKISTERÖINTIÄ VARTEN Français: PLATEFORME EUROPÉENNE POUR LES REGISTRES DE MALADIES RARES: ENSEMBLE D’ÉLÉMENTS DE DONNÉES COMMUNS POUR LES REGISTRES DE MALADIES RARES Hrvatski: EUROPSKA PLATFORMA ZA REGISTRACIJU RIJETKIH BOLESTI: SKUP ZAJEDNIČKIH PODATKOVNIH ELEMENATA ZA REGISTRACIJU RIJETKIH BOLESTI Magyar: A RITKA BETEGSÉGEK NYILVÁNTARTÁSÁNAK EURÓPAI PLATFROMJA: A RITKA BETEGSÉGEK NYILVÁNTARTÁSÁRA VONATKOZÓ KÖZÖS ADATELEMEK EGYÜTTESE Italiano: PIATTAFORMA EUROPEA PER LA REGISTRAZIONE DELLE MALATTIE RARE (Piattaforma EU RD): INSIEME DEGLI ELEMENTIDI DATICOMUNIPER LA REGISTRAZIONE DELLE MALATTIE RARE Lietuvių: EUROPOS RETŲJŲ LIGŲ REGISTRAVIMO PLATFORMA (ES RETŲJŲ LIGŲ PLATFORMA): BENDRI RETŲJŲ LIGŲ REGISTRAVIMO DUOMENŲ ELEMENTAI Latviešu: EIROPAS RETO SLIMĪBU REĢISTRĀCIJAS PLATFORMA: KOPĪGU DATU ELEMENTI RETO SLIMĪBU REĢISTRĀCIJAI Malti: IL-PJATTAFORMA EWROPEA DWAR IR-REĠISTRAZZJONI TAL-MARD RARI: SETT TA’ ELEMENTI TAD-DATAKOMUNI GĦAR-REĠISTRAZZJONI TAL-MARD RARI Nederlands: EUROPEES PLATFORM VOOR DE REGISTRATIE VAN ZELDZAME ZIEKTEN (EU RD Platform): ZELDZAME ZIEKTEN Polski: EUROPEJSKA PLATFORMA NA RZECZ REJESTROWANIA CHORÓB RZADKICH: REJESTROWANIA CHORÓB RZADKICH Português: PLATAFORMA EUROPEIA PARA O REGISTO DE DOENÇAS RARAS(PLATAFORMA UE-DR): CONJUNTO DE ELEMENTOS DE DADOS COMUNS PARA O REGISTO DE DOENÇAS RARAS Română: PLATFORMA EUROPEANĂ DE ÎNREGISTRARE A BOLILOR RARE: SET DE ELEMENTE DE DATE COMUNE PENTRU ÎNREGISTRAREA BOLILOR RARE Slovenčina: EURÓPSKA PLATFORMA O REGISTRÁCII ZRIEDKAVÝCH CHORÔB (PLATFORMA PRE ROZVOJ VIDIEKA V EÚ): ZRIEDKAVÝCH CHORÔB Slovenščina: EVROPSKA PLATFORMA ZA REGISTRACIJO REDKIH BOLEZNI: BOLEZNI Svenska: EUROPEISKA PLATTFORMEN FÖR REGISTRERING AV SÄLLSYNTA SJUKDOMAR: GEMENSAMMA DATAELEMENT FÖR REGISTRERING AV SÄLLSYNTA SJUKDOMAR

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