Register rAre adult solid canceRs In iTalY (RARITY)

The Register rAre adult solid canceRs In iTalY (RARITY) project started on September 1, 2020, and lasted 9 months (until May 31, 2021). RARITY aimed to launch the Italian component of the European Reference Network for Rare Adult Solid Cancers (EURACAN), strengthening collaboration between expert centers in adult solid cancers, members of both the Alliance Against Cancer (ACC) and EURACAN.

The specific objective of this project was to create an Italian platform, including a clinical database and a virtual biobank for the prospective collection of clinical data on rare adult solid cancers. The project proposed IT solutions for the acquisition, integration, and sharing of sensitive data among the involved centers. These solutions were adapted to the hospital information systems of the ACC centers participating in the project. Additionally, the project collaborated with the European STARTER project, which aimed to define the EURACAN clinical registry.

The centers involved in the RARITY project were:

  • Fondazione IRCCS Istituto Nazionale dei Tumori (INT)
  • IRCCS Ospedale Policlinico San Martino (IST)
  • Istituto Europeo di Oncologia (IEO)
  • IRCCS Istituto Clinica Humanitas (ICH)
  • IRCCS Ospedale San Raffaele (OSR)
  • Istituto Oncologico Veneto, IRCCS, Padova (IOV)
  • Istituti Fisioterapici Ospitalieri (IFO)
  • FPO IRCCS Candiolo
  • Centro Nazionale di Adroterapia Oncologica (CNAO)

Rare adult solid cancers include 10 families of rare tumors:

  • Sarcomas;
  • Rare neoplasms of female genital organs and the placenta;
  • Rare genitourinary tumors;
  • Neuroendocrine tumors (NETs);
  • Rare gastrointestinal tumors;
  • Endocrine tumors;
  • Rare head and neck tumors;
  • Rare thoracic tumors;
  • Rare skin tumors and ocular melanoma;
  • Central nervous system (CNS) tumors.

The RARITY project lasted 9 months and, therefore, was not able to define a registry for all families of rare adult solid cancers. However, the centers involved in this project – many of which were already members of EURACAN – have specific expertise in rare adult solid cancers and maintain dedicated databases for these cancers. This project leveraged the experience of these centers and relied on existing databases to standardize data collection towards common goals.