Intelligent ecosystem to improve
the governance, the sharing,

and the re-use of health data for rare cancers

Pilot projects selection

IDEA4RC aims to develop a federated data ecosystem for rare adult solid cancers focusing on two groups of these cancers: soft tissue sarcomas and head and neck cancers.

The ecosystem will be tested through measures of quality, usefulness, usability, and efficiency, collected in real world use cases. This deliverable provides a description of the research questions identified through interviews with sarcoma and head and neck cancer expert oncologists and a survey conducted among the IDEA4RC clinical partners.

The research questions belong to four areas.

  1. Description of the natural history of soft tissues sarcomas and head and neck cancers (how the rare cancer develops, progresses, possible association with other diseases, etc.).
  2. Evaluation of factors that influence prognosis (measured through mortality, survival, progression-free survival) and response to treatments.
  3. Assessment of treatment effectiveness (systemic, radiotherapy, surgery, target therapy, immunotherapy, and possible combinations).
  4. Quality of care (diagnostic and staging procedures, treatment strategies, follow-up, etc.).

At least four paradigmatic use cases will be selected among the research questions identified so far, considering the data and information that will be made available by the hospitals contributing to the IDEA4RC ecosystem. The use cases will be deployed across the EURACAN expert centers that participate into the IDEA4RC consortium.

Based on the identified research questions and the expectations and comments of oncologists and researchers, two core sets of clinical data were defined. These core datasets are intended as a starting point.

We summarize below the identified research questions grouped by major objectives.

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  1. Description of the natural history of disease.
    • Occurrence of skeletal metastases in meningeal and extra-meningeal sarcomas, in order to personalise patients’ follow-up.
    • Incidence of radiation induced secondary tumours in patients with sarcomas, in order to define a personalised follow-up of patients treated with radiotherapy to ensure early diagnosis.
    • Survival rate and incidence of metastases in angiosarcomas, depending on the primary tumour site (visceral or not) and on prior treatments, in order to personalize patients’ follow-up.
  2. Identification and validation of prognostic and predictive factors.
    • Validation of candidate prognostic factors (survival and recurrence) for patients with primary retroperitoneal sarcomas, to predict the risk of disease progression and plan appropriate treatment strategies.
    • Evaluation of the tumour cells density (cellularity) as a prognostic factor in myxoid liposarcomas, in order to decide whether treatments should be more or less aggressive.
    • Identification of risk factors for metastatic potential of chordoma. based on genetic alterations. Recent studies have identified several genetic alterations that may be associated with an increased risk of chordoma metastasis.
    • Assess the validity of tumour location as a prognostic factor in the extra-skeletal Ewing sarcoma. Ewing sarcoma usually affects bones, but it can also occur in soft tissues outside of the bones. In the latter case it is called extra-skeletal Ewing sarcoma.
    • Identification of factors that influence post-surgery outcomes in patients with head and neck cancers, to better tailor post-surgery follow-up and treatment options.
    • In solitary fibrous tumours, a type of soft tissue sarcoma, the ratio between the number of cells undergoing mitosis in a tumour sample to the total number of cells in the sample, is regarded as a measure of the cancer aggressiveness. Could this ratio be used as a prognostic factor in designing the treatment strategy?
    • The relationship between the volume of cases of retroperitoneal sarcoma treated by a clinical center and the postoperative outcome of its patients is not sufficiently understood. Answering this question could help to offer appropriate patients’ referral and quality of care.
    • Among the candidate prognostic factors of solitary fibrous tumours, a type of soft tissue sarcomas that start from the connective tissue and can affect any part of the body, is the site of distant metastases. Patients with skeletal metastases seem to fare worse than those with metastases in the liver or the lungs. Assessing this hypothesis could help to better define the treatment strategy.
  3. Assess the effectiveness of treatment and diagnostic procedures.
    • Compare the diagnostic accuracy of two common biopsy techniques used in the pre-surgical diagnosis of salivary gland tumours: fine needle aspiration (FNA) and core biopsy.
    • Assess the outcomes of patients with sino-nasal cancer who undergo induction chemotherapy. Induction chemotherapy is a treatment approach where chemotherapy is administered before the main treatment, such as surgery or radiation therapy.
    • Better evaluate the effectiveness of photon and proton-based radiotherapy in patients with low and intermediate grade mucoepidermoid cancers of the salivary gland.
    • Understand whether patients with salivary gland cancers who undergo chemotherapy after surgery and radiation fare better than those who don’t.
  4. Monitoring the quality of care.
    • Evaluate healthcare provider adherence to national and international guidelines, for both soft tissue sarcomas and head and neck cancers.
    • Differences across countries in factors such as clinical management, cancer histology and site, patients’ age, for both soft tissue sarcomas and head and neck cancers.

You can download the document here.