International Rare Cancer Initiative Expression of Interest call 2023 for new rare cancer working groups 2023

Background to IRCI:

The aim of this initiative is to facilitate the development of international clinical trials for patients with rare cancers to boost the progress of new treatments for these patients. The initiative hopes to encourage the use of innovative methodologies to maximise the potential for answering research questions and to identify and overcome barriers to international trials to allow international collaborative trials to run smoothly.

The value of IRCI is that the IRCI Board consists of wider range of international funding & cross organisational expertise which offer IRCI members clear guidance about funding. The initiative also acts as a platform for trial development.

EOI submission

To submit an EOI to establish a new IRCI rare cancer disease group:

  1. Read on page two the Terms and Conditions for establishing a new rare cancer working group
  2. Complete the EOI form
  3. Send EOI form to by 5th April 2023.

Your EOI will be shared with the IRCI Board and their countries’ respective clinical communities.

Next steps

In Summer 2023 the IRCI Board will assess where there is shared interest to collaborate internationally and where there is scope to deliver a feasible hypothesis driven practice changing clinical trial. Feedback will be provided post ASCO 2023 to advise if your proposed IRCI rare cancer group has been selected to take forward.

Should you wish to discuss further, or if you have any questions, please contact

Terms and Conditions:

Each IRCI working group adds value to the initiative by aiming to design, develop and deliver an innovative trial in a rare cancer area within three years. An IRCI working group participates in bi-annual virtual meetings and works collaboratively by contributing their clinical knowledge, skills, where possible sharing data, and common approaches to overcome barriers to rare cancer research.

A working group involves two-three group leads, each lead comes from a different country and includes various members who range in discipline, geographic location & skills.

For any new working group applying to the EOI please note that IRCI does not expect them to come in with the group fully set up and the Office can help support you in with setting up of the group (I.e., membership).

IRCI Group Activity It is expected that IRCI group meetings and virtual conferences should be supplemented by group activity offline.

Group leads are responsible for building the broader group membership and self-managing the groups direction, driving progress to design/set up/deliver trial and to seek funding nationally (IRCI does not provide funding for trials).

As part of group discussions IRCI Group/trial leads are responsible for ensuring that a trial; is feasible to deliver in the participating countries in a timely manner (in terms of patient numbers, treatment available, and trial design) with consideration of statistical contingency plans if the trial is not approved in a planned country. Groups should also ensure trials developed are acceptable to patients and clinicians in participating countries is in line with anticipated funders’ funding schemes/priorities.

The EOI application needs to come from at least two different continents. There needs to be proven international engagement from at least two continents. There needs to be cancers of unmet need.

IRCI Secretary Support The IRCI secretariat will facilitate virtual meetings to support the group’s discussions – including a face-to-face meeting at ASCO each year.

No funding is available to support travel arrangements of IRCI group leads or IRCI group members to attend IRCI meetings. Meetings are planned virtually or potentially alongside conferences at which it is expected your colleagues would already be attending.

Support with funder level engagement/alignment, signposting and sharing of best practice.

IRCI groups will be facilitated for up to 3 years, at which time it would be anticipated that trial set up would be under way.

IRCI Board Support During future Board meetings there will be a standing 20–30-minute agenda item available as an open session for guidance for developing rare cancer trials for IRCI Working Groups members.