CAPRI Quality Registration
We believe that patients with metastatic prostate cancer deserve the most optimally appropriate treatment. Quality registrations provide optimal insight into daily practice. CAPRI provides a transparent, anonymized and substantiated picture of the most common therapies and their results in Dutch hospitals with the aim of supporting shared decision-making in the consultation room.
With the CAPRI register as a basis, we provide dashboards, reports, articles, tutorials and best practices from the CAPRI Knowledge Center. In this way, we support patients, doctors, treatment teams and organizations in achieving the most appropriate care. We offer treatment teams the tools to make informed and substantiated decisions based on individual patient profiles.
An important step in achieving our mission is inclusion in the national register for quality registrations.
Added value CAPRI
CAPRI has proven over the past 12 years that the unlocking of data does not have to be hampered by the availability of discrete fields. This gives professionals the space to collect indicators and information that actually has substantive added value. This involves minimal administrative burden for the professionals involved and a high degree of standardization and uniformity for the processing of the information.
The method of data collection is therefore an innovation for the Dutch landscape of quality registers.
CAPRI has broad support in the field as a registry, with 38 hospitals responding positively to participation, 22 hospitals have started collecting data and 8 more hospitals can start in the short term.
In this way, the CAPRI foundation anchors its position as a source of information on prostate cancer care in the Netherlands. From this core, the collection, sharing and feedback of data on care for metastatic and castration-resistant prostate cancer will be further expanded. The ultimate goal is to contribute to improving care patterns and the effectiveness and consequences of treatments.
Application process started
CAPRI has been included in assessment round 9 for assessment by the ICG and DCG. A final recommendation will be available at the end of September 2025.
For the exact planning we refer to the website https://ssc-dg.nl/toetsing_igc_dgc/toetsingsproces/
Datadictionairy CAPRI
For the purpose of the registration process, the link to the Datadictionary CAPRI
CAPRI Strategic Developments
IQVIA Collaboration
We are proud of the strategic collaboration between the CAPRI Foundation and IQVIA, in which the CAPRI Foundation will use, among other things, the NLP software CTcue and the IQVIA registration data platform.
The Natural Language Processing (NLP) tool CTcue is used for collecting data. CTcue facilitates software that can extract and harmonize (un)structured data from the EHR. This makes data that has already been recorded in the EHR accessible for reuse without additional registration burden.
The software makes a copy of the EHR in a local database within the hospital environment. A search query is used to search this local database. The CAPRI query contains the data dictionary that has been determined. The CAPRI query provides a set of found data, which can be run through and validated, and then the dataset can be delivered to the registration holder. The delivery from the hospitals to the registration holder is standardized and uniform, regardless of EPD and regardless of textual or structured data. The query can, if desired, be shared with other hospitals. This makes it possible to make clear comparisons.
We asked IQVIA to be our technology partner for both the collection of data and the processing and provision of the data and the resulting information and insights.
CAPRI Transition
The CAPRI Foundation is currently set up to facilitate scientific research (CAPRI 3.0). In order to meet future objectives, the organization is being transformed into a structure that is primarily focused on functioning as a broad quality register with national responsibility. This new structure is based on a solid medical and scientific foundation, supplemented with innovative methods for data collection and analysis. This means that CAPRI not only continues to meet the requirements for a quality register, but also becomes a leading platform for transparency and care improvement.
Governance and internal organization
Developing a transparent and effective governance structure that fits the new phase. In order to make the governance structure broadly supported, close cooperation agreements are made with professional associations and patient organizations. This ensures that the selection and appointment of board members is transparent and the interests of all parties are safeguarded.
Expanding and professionalizing the internal organization. This means expanding personnel capacity and implementing advanced IT systems for data quality and security.
Party collaboration
We see enormous added value in collaboration with other parties. In this respect, collaboration with the DPA as a quality registry for localized prostate cancer seems obvious. The DPA does not focus on the registration and development of indicators for metastatic and castration-resistant prostate cancer. CAPRI has the vision that, together with the DPA, the entire chain of care for patients with prostate cancer can be mapped out.
Indicators Working Group
The CAPRI Foundation will adapt its internal organisation to the requirements of the quality register. From 1 May 2025, an Indicators Working Group will be set up, in which the relevant professional associations and patient organisations are fully represented. This working group plays a crucial role in the development, validation and implementation of quality indicators and ensures a broadly supported process.
Compliance
As soon as CAPRI is included in the quality register, the basis for the data supply changes. This is currently scientific research (including informed consent procedure), after inclusion the data will be provided on the basis of the legal basis. This requires a different setup and boundary conditions for the compliance elements. CAPRI aims to complete a NEN/ISO certification process after inclusion in the register and to appoint its own data protection officer.
In the current situation, Radboudumc is responsible for the execution, quality and safety of the scientific research CAPRI 3.0 including the security of the data processing. Radboudumc is NEN certified and has an extensive organization for information security. For more information, we refer towww.radboudumc.nl
In addition, CAPRI works with IQVIA for part of the data processing. IQVIA is also NEN/ISO certified and has a data protection officer.
Nynke Ruinard
Boutenslaan 195-C
5654 AN Eindhoven
Nynke.ruinard@cuccibu.nl
+31 (0) 85 303 2984 egevensbescherming .
Background information
National quality registrations
Within medical specialist care (MSZ), there is collaboration on efficient national governance of quality registrations. For quality registrations, this means that they must periodically go through a process, among other things to be included in the national register for quality registrations.
More information can be found at https://www.landelijkekwaliteitsregistratie.nl/
IGC/DGC review process
The HLA parties in specialist medical care1 have instructed the Content Governance Committee (IGC) and Data Governance Committee to make good governance agreements on quality registrations and the associated data collection and data processing. The aim of these agreements is to ensure that on the one hand, quality registrations actually contribute to quality improvement in medical practice, and on the other hand, that the required effort that the field must make for this is minimal.
More information can be found at https://ssc-dg.nl
