European Prospective Registry

Prospective Registry

The EHE Rare Cancer Charity (UK) is contributing funding to the setting up and initiation of the pan-European EHE prospective observational registry that will be managed and led by Dr Annalisa Trama and the team at INT in Milan, Italy. The registry is contained within the European STARTER project established by the European Reference Network in Rare Adult Solid Cancers (EURACAN). Patients are enrolled and data contributed by clinical providers at the participating hospitals/centres. EHE is the first cancer within this important new data gathering initiative.

What is a cancer registry?

Generally speaking a cancer registry is an information system designed for the collection, storage, and management of data on persons with cancer. There are two major types of cancer registries: population-based registries and hospital-based registries. Cancer registrars are the people who collect and report cancer data.

Population-based registries record all cases in a defined population (most frequently a geographical area such as a country (e.g. The Netherland, Italy etc), a region (e.g. Tuscany) or a metropolitan area (e.g. Milan). Population-based registries are designed to provide  answers to questions such as:

  • How many cases of a specific cancer (e.g. lung cancers, sarcomas etc.) are newly diagnosed in a specific country, or in other countries?
  • Is the number of newly diagnosed cancers increasing or decreasing?
  • What is the prognosis? Is it getting better?

Hospital-based registries maintain data on all patients diagnosed with cancer at a particular healthcare facility. The focus of the hospital-based cancer registry is on improving patient care. These registries often provide informational opportunities for those who want to learn more about specific cancer types and support for those who may suffer from it. In other words, these registries are more clinically oriented and developed to support research and improve care for specific cancers.

The EHE Prospective Registry is in fact a combination of the above two types of registries. It is collecting data in participating hospitals as a hospital-based registry. However, with the rarity of EHE, one hospital alone cannot provide a meaningful patient cohort, and as a result hospitals that meet the entry criteria are participating from across Europe, giving the registry the appearance of population based registry. This federated structure (each location holds its own data) will ultimately enable the combined data to be analysed and interrogated collectively.

Why a registry for the European Reference Network in rare adult solid cancers (EURACAN)?

The registry was developed on the understanding that gathering data on rare cancers is critical and will support research to increase their understanding. The new evidence will help to develop and/or improve clinical practice guidelines, to support multidisciplinary discussion and consultations for patients with rare cancers and ultimately to improve quality of care across Europe.

Project Launch

After nearly two years of incredibly dedicated work undertaken by the STARTER team at INT, the project was finally launched on 15th September 2023 in Milan. A total of 22 European institutions, including the UK, have signed up to the project and will be collecting data and information for their participating patients. Representatives of the EHE Rare Cancer Charity (UK), The EHE Foundation and EHE Italia Non Solo Laura were all present. Hugh Leonard, Chair of Trustees of the EHERCC was also delighted to have the chance to present information about the EHE Group to the attendees and those participating virtually, and to congratulate them on the launch of this important registry.

What is exciting you about this work and the potential results?

We believe that this EHE registry will improve our information on the natural history of EHE, on the prognosis of patients with EHE based on disease presentation, on the activity (effectiveness) of systemic agents currently available for the disease, and provide information (real world data) which may be used in the future as comparison external data for non-randomised clinical trials. Moreover, we are working so that this data collection can in the future “talk” with other EHE data bases from extra-EU countries (e.g. US, Canada, Australia etc). Finally, we think that the registry will also help in harmonizing the treatment of the disease across European countries.

The EHE Registry project is being led by Dr Annalisa Trama and Dr Silvia Stacchiotti. Dr Anna Frezza is also a key member of the research team.

Dr A. Trama
Dr S. Stacchiotti
Dr A. Frezza