- Create awareness
- Build a community
- Facilitate medical data sharing for further research
Helping to Progress New Treatments
Primary brain tumours are rare, and progress on new treatments is slow as a result.
Existing approaches to improving outcomes tend to involve linking data from patients over several years, or linking data from several institutions. Data tends to come from a few centres, and is supplied by clinicians. Data is collected according to some well-defined criteria (GBM, or LGG, or glioma), and stored based on defined metadata standards (e.g. ICD-10; DICOM). Research contracts are signed between individual institutions and some central co-ordinating body (e.g. a university) which provide a legal basis for data-sharing.
Some tumours like DLGNT, are VERY rare. If we want to make progress on the very rare ones, we need to rethink how we approach them. It is difficult to set-up conventional research programs for tumours that occur less than once a year in the UK, or where a clinician might see one or two such patients in their entire career. Sustaining the research infrastructure is hard, and coding schemes make it difficult to identify some of the very rare tumours, where coding schemes do not always reflect clinical reality well.
How Can We Make Progress ?
We can make progress if we take an international approach, work with patients and clinicians, and use patients and carers to drive data-sharing. This should enable us to collect enough data for meaningful research into treatment for DLGNT.
We would need to collect data on patient demographics, tumour samples, imaging, treatment and outcomes. As a guide, the paper that defined molecular typing of DLGNT used data on 30 patients. https://pubmed.ncbi.nlm.nih.gov/29766299/
The easiest way to share data is with patient or family consent – for a specific purpose and on a specific platform. We can help with that and are currently working to not only align de-personalised patient data (on format across different boundaries) but with the aim of collecting and integrating data from across a multitude of countries, and then sharing that data, using a Trusted Research Environment, with researchers who want to make use of it.
This initiative needs a combination of academic, clinical, data, charity and patient input.
How Can You Help ?
Get in touch with us via our email address or the Let's Chat! button if you, or your family have been affected by DLGNT, or if you know of anyone with this rare form of cancer.
With so little known about this cancer, it can often leave patients, families and even doctors at a loss as to what to do. By coming forward we can build a DLGNT community that not only enables us to rapidly share learnings, experiences and knowledge, but which also puts us in touch with people who understand what it feels like to receive a DLGNT diagnosis.
So far we have connected with DLGNT patients and their families through Facebook and connections with doctors all over the world. Many of these families are willing to help by sharing their story, their experience and most importantly their medical data. If you are interested in helping please send us an email or click on Let's Chat !