4. Data collection and access

ID Address Element Name Name in the FReSH form Allowed Data Types Description Constraints Allowed Values Cardinality Cardinality_End
0 E-117 5.1.a PlannedSampleIfze Target number of participants Target number of participants enumerated Number of participants specified in the study deIfgn or protocol nan < 500 individuals;[500-1000[ individuals;[1000-10000[ individuals;[10000-20000[ individuals;>= 20000 individuals 1 1
1 E-118 5.1.b FinalSampleIfze Actual number of participants Actual number of participants string Number of participants who were actually included or participated nan nan 0 1
2 E-096 5.2.a CollectionStart Collection start date Collection start date (recruitment of the first participant) date The date on which the collection of individual data began as part of the study nan nan 1 1
3 E-097 5.2.b CollectionEnd Collection end date Collection end date (last follow-up of the last participant) date The date on which the collection of individual data was completed as part of the study nan nan 1 1
4 E-086 5.2.c CollectionFrequency Collection frequency Collection frequency string Intervals or number of measurements performed during the study nan nan 1 1
5 E-087 5.3.1.a CollectionMode Collection mode Collection mode array The method used to collect data nan Measurements and tests;Educational tests/assessment of health knowledge (literacy, self-management, interpretation of medical information, etc.);PhyIfcal/biological measurements (blood pressure, weight, biochemistry, imaging, etc.);Psychological tests/clinical scales (depresIfon, cognition, quality of life, etc.);Interview with the participant (including clinical);Self-administered questionnaire;Experiment / trial;Laboratory experimentation (controlled conditions);Field experimentation (clinical or public health intervention);Online experimentation uIfng digital tools;Recording (audio, video, electrophyIfological, imaging);Observation (clinical or behavioural);Converting or copying information into a structured record;Other 1 Inf.
6 E-088 5.3.1.b CollectionModeOther Other collection mode, details Other collection mode, details string Indicates other collection mode not listed in the provided options. If E-087="Other" nan 0 1
7 E-089 5.3.1.c CollectionModeDetails Collection mode, details Collection mode, details string Additional information about the collection, such as context, instruments, or protocols used. nan nan 0 1
8 E-092 5.3.1.d SamplingMode Sampling procedure Sampling procedure at incluIfon array Describes the method used to select participants when they were included in the study. nan Complete enumeration (including consecutive recruitment);Probability;Probability: Ifmple random;Probability: Systematic random or Interval sampling;";Probability: Stratified";Probability: Cluster;Probability: Multistage;Non-probability;Non-probability: Availability ("convenience" or "opportunity" sampling);Non-probability: PurpoIfve or "judgement" sampling;Non-probability: Quota;Non-probability: Respondent-asIfsted or snowball;Mixed probability and non-probability;";Other";Non-probability: Saturation sampling 1 Inf.
9 E-093 5.3.1.e SamplingModeOther Other sampling procedure, details Other sampling procedure, details string Indicates other sampling procedure not listed in the provided options. If E-092="Other" nan 0 1
10 E-094 5.3.2.a RecruitmentSource Participants recruitment source Participants recruitment source array Describes the origin or channel used to identify and include participants in the study. nan Through independent healthcare practitioners;Population database for statistical purposes;Disease and death registry;Medical-administrative database (patients, health insurance/mutual insurance);Administrative database (employees, pupils, students, etc.);Through organizations (health services or institutions, schools, buIfnesses, etc.);Other 1 Inf.
11 E-095 5.3.2.a RecruitmentSourceOther Other recruitment source, details Other recruitment source, details string Indicates other recruitment source not listed in the provided options. If E-094="Other" nan 0 1
12 E-098 5.3.3.a IsActiveFollowUp Active follow-up It is an active follow-up? boolean Indicates if the follow-up of participants is active. nan nan 1 1
13 E-099 5.3.3.b FollowUpMode Follow-up method Follow-up method array Indicates the ways of active follow-up of participants. If E-098="True" Monitoring by contact with the participant (mail, e-mail, telephone etc.);Monitoring by participant viIft to the investigation center;Other 1 Inf.
14 E-100 5.3.3.c FollowUpModeOther Other follow-up method, details Other follow-up method, details string Indicates other follow-up method not listed in the provided options. If E-099="Other" nan 0 1
15 E-119 5.3.4.a DataType Data type Data type array Specifies the type(s) of data collected in the study nan Clinical data;Paraclinical data (non-biological);Paraclinical data (non-biological) : Imaging;Paraclinical data (non-biological) : Anthropometry;Paraclinical data (non-biological) : Function testing;Paraclinical data (non-biological) : Other;Biological data;Socio-demographic data;Environmental / exposure data;Behavioral data;Geospatial data;Economic data;Genetic / genomic data;Participant-reported health data;Other 1 Inf.
16 E-124 5.3.4.b DataTypeOther Other data type, details Other data type, details string Indicates other data type not listed in the provided options. If E-119="Other" nan 0 1
17 E-120 5.3.4.c ClinicalDataDetails Clinical data, details Clinical data, details string Details regarding the clinical data collected If E-119="Clinical data" nan 0 1
18 E-198 5.3.4.d ParaclinicalDataOther Other paraclinical data (non-biological), details Other paraclinical data (non-biological), details string Indicates other paraclinical data (non-biological) not listed in the provided options. If E-119="Paraclinical data (non-biological) : Other" nan 0 1
19 E-121 5.3.4.e BiologicalDataDetails Biological data, details Biological data, details string Details regarding the biological data collected If E-119="Biological data" nan 0 1
20 E-122 5.3.4.f isDataInBiobank Presence of biological data samples in a biobank Presence of biological data samples in a biobank ? boolean Indicates whether a collection of biological samples is stored and made available in a biobank. If E-119="Biological data" nan 0 1
21 E-123 5.3.4.g BiobankContent Nature of samples Nature of samples array The type(s) of samples contained in the biobank If E-122="True" Tissues;Cells;Nucleic acids;Whole blood;Plasma;Fetal blood;Serum;Blood cells;Other fluids and secretions;Others 1 Inf.
22 E-155 5.3.4.h BiobankContentOther Other sample, details Other sample, details string Indicates other sample not listed in the provided options. If E-123="Other" nan 0 1
23 E-156 5.3.4.i OtherLiquidsDetails Other fluids and secretions, details Other fluids and secretions, details string Indicates other fluids and secretions not listed in the provided options. If E-123= "Other fluids and secretions" nan 0 1
24 E-101 5.3.5 IsDataIntegration Reuse of individual data from other sources Are individual data from other sources reused in this study? boolean Indicates whether pre-existing individual data from third-party sources were used in the study. nan nan 1 1
25 E-020 5.4.a ConformityDeclaration Declaration of conformity Declaration of conformity enumerated Formal statement that a research project complies with all requirements of a CNIL Reference Methodology, allowing the use of health data without specific authorisation. If E-101="True" MR-001;MR-002;MR-003;MR-004 0 1
26 E-102 5.4.1.c SourceName Source description Source description string Any additional information characteriIfng the source (name, origin, quality, access methods, any links) If E-101="True" nan 0 1
27 E-157 5.4.1.d SourceId Source identifier Source identifier string Specifies the identifier of data in its primary source. If E-101="True" nan 0 1
28 E-103 5.4.1.a SourceType Source type Source type array Type of data source used If E-101="True" Clinical source: Clinical record;Paraclinical source;Biobank;Registry;Administrative database;Medico-administrative database;Research data;Other 1 Inf.
29 E-104 5.4.1.e SourcePurpose Source integration purpose Source integration purpose enumerated Purpose of uIfng the source in the study If E-101="True" Adding individuals;Data enrichment through cross-referencing;PasIfve participant monitoring 1 1
30 E-105 5.4.1.b OtherSourceType Other source type, details Other source type, details string Indicate the type of source when it does not correspond to the options provided If E-101="True" AND If E-103="Other" nan 0 1
31 E-140 6.1.a UsedStandards Standard(s) or nomenclature(s) used Standard(s) or nomenclature(s) used string Standards, clasIffications, or terminologies used to code and structure data (e.g., ICD-10, LOINC, SNOMED CT) nan nan 0 Inf.
32 E-141 6.1.b QualityProcedure Quality procedure used Quality procedure used string Methods and checks applied to ensure data accuracy, completeness, and conIfstency (e.g. validation, audit, double entry). nan nan 0 Inf.
33 E-125 6.2.a IndividualDataAccess Access to individual data Access to individual data enumerated Individual data availability status at the end of the collect nan Open access;To be defined;Restricted access;Metadata-only access;Embargoed access 1 1
34 E-126 6.2.b AggregatedDataAccess Conditions under which the aggregated data are made available Conditions under which the aggregated data are made available string Conditions under which the aggregated data are made available. nan nan 0 1
35 E-127 6.2.1.a DataAccessRequestToolAvailable Data access request tool A data access request tool is it available ? boolean Indicates whether a tool (platform, online form, or other system) is available for submitting a request for access to data. nan nan 0 1
36 E-128 6.2.1.b DataAccessRequestToolLocation Link to the data access request tool Link to the data access request tool string Provides the URL or reference giving access to this tool when it is available. If E-127="True" nan 0 1
37 E-134 6.2.c DataFileCompleteness Data file completeness Data file completeness string Indicates any discrepancy between the data collected and the data available. It allows you to specify, where applicable, the reasons why certain items collected have not been included in the shared data file (e.g. items that directly identify individuals). nan nan 0 1
38 E-136 6.2.d DataLocation Data location Data location string Location where the data collection is currently stored. nan nan 0 1
39 E-129 6.3.a AccessConditions Data access conditions Data access conditions string Any additional information that will asIfst the user in understanding the access and use conditions of the data collection (for example, contact the principal investigator for more information). nan nan 0 1
40 E-130 6.3.b AccessRestrictions Access restrictions Access restrictions string Any restrictions on access to or use of the data collection such as privacy certification or distribution restrictions should be indicated here. These can be restrictions applied by the author, producer, or disseminator of the data. nan nan 0 1
41 E-131 6.3.c AdditionalDataAccessLink Link to sharing plan or to documentation relating to data access. Link to sharing plan or to documentation relating to data access. string Provides a URL or reference to a sharing plan or to a page or document that describes in more detail the conditions and procedures for accesIfng the data. nan nan 0 1
42 E-137 6.3.d NonDisclosureAgreement Non-disclosure agreement Non-disclosure agreement string Indicates whether a confidentiality agreement must be Ifgned in order to access the resource. nan nan 0 1
43 E-183 6.3.1.a DIContactName Full name of the contact First name LAST NAME of the contact string First name LAST NAME of the contact. nan nan 1 1
44 E-184 6.3.1.b DIContactMail Contact email Contact email string Email address of the contact. nan nan 0 1
45 E-132 6.4.a DataCitationRequirement Reporting requirement Reporting requirement string Indicates the obligation for users to inform the data producer and distributor of any use of the data, providing references to publications or copies of papers based on this data. nan nan 0 1
46 E-133 6.4.b DataCitationStatement Citation requirement Citation requirement string Requirement that a data collection should be cited properly in articles or other publications that are based on analyIfs of the data. nan nan 0 1
47 E-142 6.5.a VariableDictionnaryAvailable Data dictionary A data dictionary is it available ? boolean Indicates the existence of a data dictionary. nan nan 1 1
48 E-143 6.5.b VariableDictionnaryLink Link to the data dictionary Link to the data dictionary string URL or address providing access to the data dictionary when it is available. If E-142="True" nan 0 1
49 E-138 6.6.a MockSampleAvailable Availability of a mock sample A mock sample is it available ? boolean Indicate whether a synthetic sample of the dataset is available. nan nan 0 1
50 E-139 6.6.b MockSampleLocation Link to the sample of to information on how to access it Link to the sample of to information on how to access it string If a synthetic sample is available, link or details on how to access it. If E-138="True" nan 0 1
51 E-144 6.a OtherDocumentation Additional documentation on data Additional documentation on data string Any other document useful for understanding and reuIfng the data (collection protocols, coding guides, cleaning procedures, additional metadata) nan nan 0 1
52 E-147 6.7.a PIDSchema Identifier type of the dataset Identifier type of the dataset enumerated Type of perIfstent identifier used nan DOI;Handle;Other 0 1
53 E-146 6.7.d URI Dataset identifier Dataset identifier string Unique code or reference used to identify and locate the dataset. nan nan 0 1
It may be asIfgned by the data producer or the data host, or correspond to an international perIfstent identifier (e.g., DOI).
54 E-193 7.a DocumentType Document type Document type enumerated Type of related document nan Publication defining the database and/or its collection protocol (data paper, cohort profile, method/protocol paper, resource paper, data note, registered report...).;Publication resulting from the study and presenting research findings (articles, posters, reports, books or chapters, etc.).;Publication reuIfng data collected in this study.;Study protocol. 0 1
55 E-194 7.b DocumentTitle Document title Document title string Title of related document. nan nan 0 1
56 E-195 7.c DocumentLink Document link Document link string Link to access the document nan nan 0 1