Inform, Empower, Connect

We were delighted to attend the 3rd annual Paediatric Cancer Data Commons (PCDC) webinar and find out how the PCDC is impacting research into childhood cancers. 

The PCDC is an exciting platform for combining and sharing data about childhood cancer. Osteosarcoma (OS) is one of the cancers in the PCDC. The project is led by children’s oncologist Dr Sam Volchenboum at the University of Chicago.

One of the challenges with researching childhood cancers is that they are rare. It can be difficult to get enough data to answer research questions. The PCDC has overcome this challenge by creating a platform where data from different sources can be used for research. The data is converted into the same format and combined meaning it can be analysed together. Through combining multiple small pools of data, it creates a data resource large enough to answer key questions about cancer.

Professor Rajkumar Venkatramani (Baylor College) described some of the questions he is hoping to answer about rhabdomyosarcoma (RMS) using the PCDC. RMS is a type of soft tissue sarcoma that can grow in any part of the body. The site of RMS in the body affects patient outcomes however it is not clear cut which sites are linked with the best/worst outcomes. The current research varies between countries. By using the PCDC to combine results from past clinical trials, Professor Venkatramani hopes to shed more light on how the location of RMS affects patient outcomes. Being able to predict outcomes is important as it helps to inform treatment plans.

The PCDC is working with experts across all 5 continents.

The PCDC has the potential to improve treatments for childhood cancer on a global level. Professor Kathy Pritchard-Jones (UCL) explained how children living in low- and middle-income countries are more at risk of poor cancer outcomes. This is partly due to a lack of access to clinical trials. The PCDC has already shown that borders are not a barrier to data sharing. They are already working with experts across all 5 continents. In the future, their infrastructure may be able to help make cancer research more accessible in low-income countries and improve treatment plans.

Alongside the PCDC platform, the development team have created a new clinical trial matching database called GEARBOx. GEARBOx is aimed at doctors and allows them to quickly check a patient’s eligibility for trials and refer them. It is currently only for patients with acute myeloid leukaemia (a type of blood cancer) but there are plans to expand it to other cancers over the next few years including OS.

The webinar finished with a discussion about the future. Currently, there are almost 30,000 data cases in the PCDC and Dr Volchenboum is hopeful that this will increase to 100,000 in the next year. He also hopes to link clinical data with genetic data, tissue samples and images to strengthen the resource even further. The more data there is the more impactful research can be done.

Having large amounts of data is not enough. The data also needs to be diverse. Different groups of people may respond differently to certain cancer treatments and it’s important this is not missed. Therefore, the PCDC is determined to include data sets from across the globe to represent everyone.

The PCDC has demonstrated that it is possible to combine multiple data sets and overcome the challenges of studying rare diseases. Therefore, the PCDC hopes to expand beyond childhood cancer. There are plans to use the platform for both cancers in young adults and rare genetic diseases.

Altogether the PCDC is a very exciting initiative that aims not only to make data more accessible but to speed up advances in medicine to improve outcomes in childhood cancers.

Find out more about the PCDC.