Research Themes Rare cancers

Rare cancers About theme

Our mission is to improve diagnosis, treatment and outcome of rare cancers, by performing translational research, clinical studies, and population-based research.

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Rare cancers About theme

Our mission is to improve diagnosis, treatment and outcome of rare cancers, by performing translational research, clinical studies, and population-based research. This is achieved in close collaboration with (inter)national partners and patient advocacy groups.

Today, two and a half million patients are living with a diagnosis of rare cancers in Europe and every year there are 488,000 new diagnoses of malignant rare cancers. Despite the rarity of each of the 223 types of rare cancer, in total they represent about 22% of all cancer cases. According to recent analysis, Rare cancers are defined as those with an incidence of less than 6 per 100,000 persons per year. In the Netherlands this amounts to a total of 23,000 new patients per year. Patients with a rare cancer have a 15% poorer overall survival rate than patients with a common cancer. Although an improvement in the prognosis of common cancers has been observed during the last five years, this has not been achieved in rare cancers. Examples of rare cancers are head and neck cancer, sarcoma, thyroid cancer, neuroendocrine cancer, brain tumors, various hematological malignancies, and pediatric cancer.

Rare cancers pose particular challenges due to their type-specific low frequency, including:

  • Late or incorrect diagnosis, partly due to late recognition and limited awareness by patients and general practitioners.
  • Lack of concentrated care and expertise.
  • Lack of access to appropriate therapies and clinical expertise.
  • A relatively small number of clinical trials due to the small number of patients.
  • Lack of interest in the development of new therapies due to market limitations; limited development or availability of disease directed drugs.
  • Few available registries and tissue banks; lack of preclinical models (cell lines, organoids, patient-derived xenografts) for basic and translational research.
  • Until recently, low on the political agenda of the international community.
The research of this theme focuses on seven main domains, four of which are connected with domains in the European Reference Network (ERN) for adult rare solid cancers (EURACAN), and one with EuroBloodNet (for rare hematological diseases).

These domains are:

  • Head and neck cancer, including salivary gland cancer and skull base cancer
  • Sarcomas
  • Endocrine tumors
  • Brain tumors
  • Rare hematological malignancies

Furthermore, two other research domains are part of the theme:

  • Adolescent and Young Adult (AYA) research
  • Lung and trachea cancers

Objectives

  • We aim to remedy late or incorrect diagnosis records.
  • We aim to improve access to appropriate therapies and clinical expertise.
  • We will raise the number of clinical trials in spite of the small number of patients.
  • We will endeavor to raise market interests in the development of new therapies.
  • We will seek to improve the number of available registries and tissue banks.

Theme leader

Carla van Herpen MD PhD
associate professor

+31 (0)24 368 66 23

Contact

News and agenda

Organisation

Research group leaders

Affiliated institutes and centers

Radboudumc Technology Center Animal research facility

This technology center offers advice and support from planning up to and including the conduct of animal research on behalf of biomedical research and education.

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Radboudumc Technology Center Clinical studies

Radboudumc provides professional support in the conduct of clinical research involving human subjects.

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Radboudumc Technology Center Imaging

The Imaging Technology Center provides cutting-edge technology and service for imaging-related preclinical and clinical research questions. This covers the spectrum from molecule to man to population.

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Radboud Institute for Health Sciences

Ideally, every procedure in clinical practice and public health should take place based on proof, instead of intuition or 'experience'. Our aim is to improve clinical practice and public health.

Radboud Institute for Molecular Life Sciences

Our main aim is to achieve a greater understanding of the molecular mechanisms of disease. By integrating fundamental and clinical research, we obtain multifaceted knowledge of (patho)physiological processes. read more
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