Status: Ongoing
First registered on:
04/07/2023
Last updated on:
28/08/2023
1. Study identification
EU PAS Register NumberEUPAS105033
Official titleDARWIN EU® CC - Multiple myeloma: patient characterisation, treatments and survival in the period 2012-2022
Study title acronym
Study typeObservational study
Brief description of the studyThe overall objective of this study is to characterise patients with multiple myeloma diagnosed in the period 2012-2022.
The specific objectives of this study are:
1. To describe demographic and clinical characteristics of patients with multiple myeloma at the time of diagnosis.
2. To describe multiple myeloma treatments (including combinations and regimen types, e.g. induction, maintenance, etc.).
3. To describe multiple myeloma treatment sequences.
4. To estimate the overall survival of incident multiple myeloma cases during the study period (2012-2022).
Was this study requested by a regulator?Yes: EMA
Is the study required by a Risk Management Plan (RMP)?
Not applicable
Regulatory procedure number (RMP Category 1 and 2 studies only)
Other study registration identification numbers and URLs as applicable
2. Research centres and Investigator details
Coordinating study entity
Centre nameDARWIN EU® CC
Centre locationRotterdam
Details of (Primary) lead investigator
Title Dr
Last name Duarte-Salles
First name Talita
Is this study being carried out with the collaboration of a research network?
Yes
Other centres where this study is being conducted
Multiple centres
In total how many centres are involved in this Study?7
Institut Municipal Assistencia Sanitaria Information System (IMASIS), Spain
Estonian Biobank, Estonia
Auria Clinical Informatics (ACI)-Varha, Finland
Clinical Data Warehouse of Bordeaux University Hospital (CDWBordeaux), France
Countries in which this study is being conducted
International study
Estonia
Finland
France
Germany
Netherlands
Spain
3. Study timelines: initial administrative steps, progress reports and final report
PlannedActual
Date when funding contract was signed07/03/202307/03/2023
Start date of data collection01/01/201201/01/2012
Start date of data analysis
Date of interim report, if expected
Date of final study report01/11/2023
4. Sources of funding
Please provide estimates of the percentage of funding by source for this study
Names(s)Approximate % funding
Pharmaceutical companies
Charities
Government bodyEMA100
Research councils
EU funding scheme
5. Contact details for enquiries
Scientific Enquiries
Title Dr
Last name Duarte-Salles
First name Talita
Address line 1Dr Molewaterplein 40
Address line 2
Address line 3
CityRotterdam
Postcode
CountryNetherlands
Phone number (incl. country code)31107043050
Alternative phone number
Fax number (incl. country code)
Public Enquiries
Title Mrs
Last name Schuemie
First name Ilse
Address line 1Dr Molewaterplein 40
Address line 2
Address line 3
CityRotterdam
Postcode
CountryNetherlands
Phone number (incl. country code)31107043050
Alternative phone number
Fax number (incl. country code)
6. Study drug(s) information
Not applicable (disease/epidemiology study)
7. Medical conditions to be studied
Medical condition(s)Yes
Multiple myeloma
8. Population under study
Age
Children (2 - 11 years)
Adolescents (12 - 17 years)
Adults (18 - 44 years)
Adults (45 - 64 years)
Adults (65 - 74 years)
Adults (75 years and over)
Sex
Male
Female
9. Number of subjects
Estimated total number of subjects20000000
10. Source of data
Is this study being carried out with an established data source?Yes
Data sources not registered with ENCePP
Estonian Biobank, Estonia
Auria Clinical Informatics (ACI)-Varha, Finland
Clinical Data Warehouse of Bordeaux University Hospital (CDWBordeaux), France
Netherlands Cancer Registry (IKNL), Netherlands
Sources of data
Disease/case registry
Routine primary care electronic patient registry
Hospital data and biobank data
11. Scope of the study
What is the scope of the study?
Disease epidemiology
Primary scope : Disease epidemiology
12. Main objective(s)
What is the main objective of the study?
The overall objective is to characterise patients with multiple myeloma diagnosed in the period 2012-2022.
Specific objectives are to describe demographic and clinical characteristics of patients with multiple myeloma at the time of diagnosis, multiple myeloma treatments and multiple myeloma treatment sequences and to estimate survival of incident multiple myeloma cases during the study period.
Are there primary outcomes?Yes
Treatment/s initiated at index date, 1 to 30, 1 to 90 and/or 1 to 365 days post index date, and death.
Are there secondary outcomes?No
13. Study design
What is the design of the study?
Cohort study
14. Follow-up of patients
Will patients be followed up?Yes
Please describe duration of follow up
Study participants will be followed up from their date of first multiple myeloma diagnosis (index date) until the earliest of the following: 1) loss to follow-up, 2) end of data availability, or 3) date of death.
15. Data analysis plan
Please provide a brief summary of the analysis method
Large-scale patient-level characterisation will be conducted. Age and sex at time of multiple myeloma diagnosis, medical history and medication use will be described. The number and % of patients receiving each of a pre-specified list of multiple myeloma treatments and treatment combinations will also be described. Additionally, treatment patterns and sequences over time will be described. Survival will be estimated as the probability of survival from any cause of death and will be reported using Kaplan-Meier plots. This analysis will be conducted only for databases with complete information on mortality. A minimum cell count of 5 will be used when reporting results, with any smaller counts obscured.
16. ENCePP seal
Are you requesting the ENCePP seal for this study?
No
17. Full protocol
18. Study Results
Not submitted
Please list the 5 most relevant publications using data from your study
ReferenceLink to web-publication
None
19. Other relevant documents
Conflict(s) of interest of
investigator(s)Not submitted
Composition of Steering Group and
ObserversNot submitted
Other documentsNot
submitted
Signed Code of
Conduct Checklist
Not submitted
Signed Code of Conduct Declaration
Not submitted
Signed Checklist for Study
Protocols
Not submitted
