World’s first EHE prospective patient registry

node leader
5 December 2021

EHERCC is delighted to be able to confirm that approval has been given for a new project that involves the setting up of a observational prospective EHE patient registry in Europe. This project will be managed and coordinated by INT in Milan. Discussions are ongoing but it is hoped that the project will involve four additional institutions in Europe. The resultant five participants at the start will be:

  1. Fondazione IRCCS Istituto Nazionale Tumori (INT) (Milan, Italy)
  2. Institute of Cancer Research (ICR) / Royal Marsden Hospital (London, UK)
  3. Centre Léon Bérard Cancer Center (Lyon, France), at the Medical Oncology Department
  4. Universitario Vall d'Hebron (Barcelona, Spain)
  5. Maria Sklodowska-Curie Institute-Oncology Center (Warsaw, Poland)

This study initially plans to include approximately 100 patients (range: 80-120), in 36 months, followed by a follow up time of at least 3 years. The study aims to provide a description of the population affected by EHE, giving an insight into the natural history of the disease and its variants, identifying reliable clinical prognostic and predictive factors, and analysing the broad spectrum of treatment approaches and subsequent outcomes, and so allowing us to answer some of the outstanding questions on its management.

Kate Hooper, trustee of the EHERCC, commented:

This is an exciting development in our battle against EHE. We have talked for some time about setting up a prospective registry. This will also be easier and potentially more successful now that the driving force, namely Dr Stacchiotti and INT, is coming from within the European sarcoma clinical community. We also hope that once established, we may be able to enrol additional European countries into the registry, and provide it as a possible registry model for other areas of the world. We could not be more grateful to INT for all that they are doing and contributing to the fight against EHE.

EHERCC is excited about this new project which we hope will go live early in 2022. We certainly look forward to providing further exciting updates in the future.

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