By Donna Greaves, Information and Support Officer, Sarcoma UK

Published: 12 April 2018

Donna Greaves, Information and Support Officer at Sarcoma UK reflects on the Clinical Trials Hub the charity launched in March 2018.

Challenges in rare disease

In September last year, Sarcoma UK began work on our clinical trials resource project after recognising there was at that point, no integrated resource for sarcoma clinical trials in the UK. Sarcoma is a relatively rare cancer; a GP is unlikely to see more than one case in their career. It has many different and distinct subtypes which poses a challenge in diagnosis and treatment, and makes access to clinical trials all the more important.

Our aim was to build an area of our website with accessible information about clinical trials including an up to date list of recruiting trials for sarcoma. This was by no means a new concept, many cancer charities were already sharing information about clinical trials and we had also been doing this to an extent for some time prior to embarking on this project. However, it was still an underdeveloped resource in an area with increasing value in sarcoma management.

Community led-objectives

Sarcoma UK began as a small patient led organisation, eight years ago,  fuelled by the need for better information and consensus about sarcoma. The charity has been pivotal in the centralisation of sarcoma care in the UK, which is now a model for care globally. As a smaller charity navigating unchartered areas of rare disease, information projects offer an opportunity to engage with the wider community, ask questions and be catalysts for change. 

Our nurse-led support line, which launched in February 2016, has been a great way to offer support for patients and their families. It has also given us a dynamic insight into their needs, which in turn helps us shape our agenda as a charity. Callers to the support line often ask about clinical trials.

For a cancer which still so little is known about, and for which treatment options can be limited, trials can offer patients a chance to access new drugs and researchers to find out more about the disease. However, evidence from our National Sarcoma Survey in 2015 found only 33% of patients were being asked about taking part in a clinical trial. At the start of our project, information about trials had been difficult to access, spread over many sites and not always up-to-date. 

Getting the process right

Sarcoma UK has worked hard to establish itself as an advocate for patient voices, but also  as a key funder in sarcoma research. The hub project was therefore an opportunity to combine two important areas of our work. We were keen for clinicians and researchers to feel this was a resource for them as well as patients.

We chose to approach the 17 specialist centres for sarcoma across the UK directly for information in addition to using online databases. This allowed us to gather more accurate details about when trials opened or closed. We liaised with trial coordinators to develop a process around keeping updated. Support from the clinical teams helped to drive the project forward. There was definitely a consensus that information about clinical trials for sarcoma was currently undeveloped and vitally needed.

It has been a learning process for the charity. Centres wanted to know our objectives and be clear about what we expected from them. We as a team had to be clear about exactly what data we needed, what we had the capacity to process and how much information people accessing our website would need. Centres were bound by confidentiality agreements by pharmaceutical companies which limited which information could be shared and when they could share it with us. In the context of a stretched NHS workforce, we were conscious of not adding to workloads. Where possible we tried to fit into existing processes, such as monthly reporting. Overall, teams were on board with the project.

The clinical trials hub: making use of the data

The Clinical Trials Hub launched in March this year. Internally it was a collaborative project between information and support, communications, and web development teams and senior management.  Input from patients and research nurses was and continues to be crucial in shaping the content and tone of the webpages. In this initial phase we are gathering data about usage and the quality of our information. In the next stage we aim to gather more specific data about what trials service users are looking for in order to feedback into the research community.

Our aim is that more patients are informed and feel empowered to engage with trials. We also hope to nurture our relationships with clinical teams so the hub is used as a resource for clinicians and a platform for researchers to provide information to the sarcoma community about trials.