Research

Raising funds for research into Desmoplastic Small Round Cell Tumour is essential. With neither pharmaceutical companies, or larger generic cancer charities prioritising funding research working together as the families and friends of those affected by the disease is crucial. We recognise the significant work put into this area by families who have gone before us, but believe that by coming together as one community we can make a bigger difference than we can alone.

With five year survival rates remaining at only 15% it is critical that research into more effective and kinder treatments is at the forefront of Capture’s mission. A mission that we can’t accomplish without your help.

Since November 2024 we have raised around £140,000.

Systematic Review of DSRCT

The first £90,000 of this will go to producing a systematic review via the CCLG and The University of York. This will ensure that all of the current worldwide research around Desmoplastic Small Round Cell Tumour is analysed and appraised. No-one will need to look for a needle in a haystack ever again to ensure they understand the research that is already out there. We estimate this work will be complete in January 2027 and will post updates to the site as soon as we have them.

DSRCT and Treatment Side Effects

We have also raised enough to fund a smaller project which will focus on the treatment of symptoms caused by DSRCT and the treatment of it. The final details of this project are currently being finalised, please check back soon for more details.

The Palliative Care of Young People With A Cancer Diagnosis That Has Less Than A 15% Survival Rate

We are currently fundraising for a project that will ensure that young people have access to the very best palliative care. The project will be the first of its kind, that takes the views of young people themselves into account. The outcome of the project will be materials for newly diagnosed young people, showing them that Living during palliative care is possible, encouraging them to continue to follow their dreams and providing them with questions they can ask their medical teams. These will sit alongside training materials for medical professionals around the practicalities of enabling patients to truly Live during palliative care.

What’s next?

There continue to be a large number of unanswered questions around DSRCT. Questions like when is surgery advisable, when is it best to use radiotherapy, how do we best improve the quality of life for those undergoing palliative care for Desmoplastic Small Round Cell Tumour remain largely unanswerable on a broader scale. There is no effective chemotherapy or radiotherapy treatment available. We need to do better and we need to do it now. The outcomes from our first research project alongside advice from a team of specialists will help us to determine which of these projects we prioritise next.

Donating today will help us to fund research to give answers to those questions most critical to patients and their families.

Are you a researcher?

If you are currently working on a research project that includes Desmoplastic Small Round Cell Tumour please let us know so that we can add the details of your project to our ongoing projects list. We hope this list will help researchers to collaborate with others looking into similar areas and avoid potential duplication of projects.

We welcome interest from medical professionals and researchers with an interest in Desmoplastic Small Round Cell Tumour who are looking for funding. We are particularly interested in supporting projects that will improve the lives of those living with Desmoplastic Small Round Cell Tumour, or those which could advance treatment for the condition.

Donation

Simply click on this link or scan the barcode to our JustGiving page and follow the instructions to safely and securely donate to capture.

Keep updated

The rarity of Desmoplastic Small Round Cell Tumour means that many of those diagnosed won’t meet others with the same diagnosis in their local hospitals. Whilst some will travel to larger treatment centres we believe strongly that this is a diagnosis that no-one should face alone.

Get involved

Finding more effective treatments for Desmoplastic Small Round Cell Tumour has never been more urgent. As survival rates for other cancers have risen over the last 20 years, those for DSRCT have remained static.