Clinical Trials
UK Clinical Trials
While numerous DIPG clinical trials exist worldwide, access within the UK NHS is currently extremely limited for newly diagnosed patients and those with relapsed disease.
We understand the urgency for new options. We've actively pursued innovative new studies to bring promising clinical trials such as CAR-T cell therapy to UK children in a timely fashion.
New National trials will launch soon in the UK, offering 'molecularly targeted' approaches for newly diagnosed patients.
We strive to help to support a variety of effective treatment methods to provide an available treatment to every UK child at home, eliminating the need for fundraising or travel for overseas trials. Ensuring every child has access to the best possible care surrounded by their crucial support network.
PNOC Clinical Trials in Europe
In 2019, the US based trials group the Pacific Paediatric Neuro-Oncology Consortium (PNOC) established a European site at the renowned University Children's Hospital of Zurich (Kinderspital). This prestigious hospital now offers some possibilities for UK patients seeking DIPG treatment options.
Additionally PNOC are now also established at the Princess Maxima Hospital in Utrecht, Netherlands offering selected DIPG/DMG treatments.
The program is led by renowned DIPG researchers and oncologists, including Dr. Sabine Mueller (PNOC lead and paediatric oncology lead at UCSF- San Francisco) and Dr. Javad Nazarian (Head of the Translational Program of the DIPG/DMG Center Zurich).
​
Important Considerations:
While this option seems to offer promising advancements and some combination therapies, it's important to be aware of the associated costs. Appointments, consultations, treatment plans, and routine tests are all self-pay and can be quite expensive. Insurance, if you have it is unlikely to cover these procedures for overseas patients, as these trial treatments are not part of clinical UK care.
Drug in clinical trials is typically provided by pharma companies free of charge; however, patients are responsible for associated hospital fees, travel, and accommodation, all at the prevailing healthcare rates in country.
For more information on PNOC trials available in European centres, please visit: https://dipgcenter.ch/
Worldwide Clinical Trials
The increasing number of trials, including industry-sponsored studies with global reach, is a positive sign. However, these larger trials may take longer to recruit enough participants within each country, potentially delaying results.
This surge in trials also reflects the growing research efforts, active field and diverse approaches for delivering DIPG treatments.
Remember: Strict eligibility criteria apply to each trial. Carefully review the information before pursuing any option.
We hope these resources empower you to explore all available possibilities.
