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Improving the methodology of clinical studies and regulatory practices in rare cancers

Task Force 1 seeks to overcome methodological studies and regulatory practices challenges in rare cancers, and it is committed: 

  • To advocate that no clinical trial on rare cancer should take place without patient involvement.​ 
  • To develop valid endpoints and establish clear guidance on alternative methodologies for ​rare cancer clinical trials.​ 
  • To argue that a higher-than-average degree of uncertainty should be accepted for clinical, as well as for population-based, decision-making 

In light of the conclusion of the Joint Action on Rare Cancers (JARC), members of Task Force 1 will build upon the JARC’s deliverables which are relevant to the goals it has set itself in order to keep pursuing the RCE mission. They will be looking to implement the following recommendations of the Rare Cancer Agenda 2030:  

  • Recommendation 2: Rare cancers should be monitored epidemiologically and clinically, properly valuing population-based cancer registry data and real-world clinical data, encouraging all efforts to make all available data bases interoperable. 
  • Recommendation 5: Research should be fostered by networking and should take into account an expected higher degree of uncertainty, exploiting clinically annotated biobanking, clinical registering, patient referral to ongoing clinical studies, as well as innovative methodologies for clinical research. 

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