Risk-Based Screening - Infrastructure Initiative 2025

Targeting high-risk families: advancing breast cancer prevention through research and infrastructure

There is a growing need for a dedicated infrastructure to register (wo)men and families at high risk for breast cancer. While existing systems, such as the Dutch Cancer Registry (NKR), effectively capture data on cancer incidence and outcomes, they are not designed to identify or monitor individuals with a heightened genetic or familial predisposition to breast cancer.

An infrastructure focused on high-risk populations would complement existing registries by addressing a critical gap: tracking individuals with a family history of breast cancer or those carrying genetic mutations. Such a registry could enable early identification, personalized screening, and targeted prevention strategies, thereby reducing the incidence and severity of breast cancer in this population.

This infrastructure would serve as a valuable resource for clinical and research purposes, offering detailed data on risk factors, genetic profiles, and long-term health outcomes. It would also facilitate collaboration between healthcare providers, researchers, and public health organizations to optimize care pathways. Integrating this system with existing infrastructures, such as the NKR, would ensure seamless data sharing while maintaining a distinct focus on prevention and early intervention for high-risk individuals.

Ultimately, the development of such a registry would enhance the overall breast cancer care ecosystem, enabling precision medicine approaches and improving outcomes for a vulnerable yet underserved population.

Through these initiatives, we strive for a future where (wo)men at elevated risk of breast cancer receive earlier, more tailored support with a lasting impact on their health and that of their families. We welcome infrastructure projects that, through multidisciplinary collaboration, can realize this vision and substantially contribute to a better future for (wo)men facing breast cancer risk.

Note: In addition to this infrastructure call there is the possibility to apply for research funding within risk based screening to identify, reach, and inform (wo)men (and their relatives) with a very high breast cancer risk (BRCA1/2 or PALB2 mutation) with tailored strategies that enable evidence-based cancer prevention while preserving quality of life. 

Scope

The Risk-based Screening 2025 - Infrastructure initiative focuses on developing infrastructure to support and facilitate the registration of (wo)men and families at high risk for breast cancer.

Terms and conditions

Standard KWF conditions apply and in addition:

• There is a demonstrated nationwide need for the proposed infrastructure. Provide information showing gaps in existing infrastructure.
• There is demonstrated broad support from and/or collaboration with the oncological community and its stakeholders at large. 
• The proposed infrastructure collaborates, consolidates, or builds upon existing infrastructures as much as possible. 
• The proposed infrastructure will be sustainable, findable, (inter)nationally available and accessible. 
  • Long-term Operational Plan: Detail how the infrastructure will be maintained and operated after the grant period, including staffing, training, and regular equipment maintenance. 
  • Financial Sustainability: Include projections for operational costs and potential revenue sources, if applicable, such as insurance reimbursements, government funding, or private partnerships
• Advisory board with experts on existing infrastructures if not participating in team (e.g. HEBON, NESTOR, Health-RI)
• Staffing and Training: Outline the staffing requirements, and ensure provisions for ongoing training for healthcare providers using the infrastructure.
• Data security and personal privacy: If the infrastructure involves patient/individual data management, include plans for compliance with data protection.
• Explanation on how the Ethical, Legal, and Social Implications (ELSI) are addressed, such as ensuring informed consent, data privacy compliance (e.g., GDPR), minimizing societal risks, and promoting inclusivity and fairness in both execution and outcomes?
• Impact assessment: Plan for an impact assessment at the end of the grant period to evaluate how well the infrastructure has met its goals.
• KWF expects that when funding has ended, the initiative is self-sustainable in order to continue and to be implemented further. Proposals include a strategy for sustainable financing of the initiative. 

Timeline

Indicative budget and duration

A total of 2-4 million is available, which will be distributed across both funding types: infrastructure and research. 

Submitting procedure

Please submit your project proposal through our KWF Grant Management System.