The Ella Project is a UK-wide study focused entirely on Adenoid Cystic Carcinoma (ACC) research. It was founded in 2019 with the aim to create a leading global centre of excellence for ACC, a rare and underserved indication
Background
The Ella Project is named after The Christie Charity patient Ella Pinney, who was diagnosed with ACC aged 32 in March 2017. Infracapital, where Ella worked at the time, expressed its desire to fundraise to drive ACC research in the UK, ultimately leading to the launch of Ella Projects 1 and 2 in 2019, with The Syncona Foundation committing £300,000 over 3 years.
The Ella Projects
The Ella Projects 1 and 2 aimed to redefine ACC on the basis of genetic and immune diversity. Ella Project 1 (ELLA01) looked to analyse the DNA and RNA of tumour samples to identify genetic mutations that could be a drug target for patients, whilst Ella Project 2 (ELLA02) looked to study the tumour immune system and therefore potential applicability of different types of immunotherapy for patients. In 2020 Ella Project 3 (ELLA03) was launched, to study live tumour samples to help screen potential treatment options. Unfortunately, Ella tragically passed away with ACC in December 2021. The Ella Project continues to lead research in ACC to help prevent others diagnosed with ACC from having limited and ineffective treatment options.
What is ACC and why is it challenging to treat?
- ACC is a rare head and neck cancer, that affects the salivary gland and other secretory glands.
- Distant recurrence occurs on most patients despite surgery/radiotherapy at diagnosis
- ACC is rare with c.300 new cases per year in the UK
- As a rare cancer there has been limited research and funding in ACC, and currently there are few effective drug therapies
- Research involving ACC patients is 20 years behind more common cancers (for example breast cancer)
Progress to date
- Established project within The Christie NHS/ University of Manchester financial and research governance framework
- Built the team
- Clinical/Genomic/Immunology/Health Technology Assessment leadership
- Full time oncology research fellow (ELLA01)
- Full time immunology post doc researcher (ELLA02)
- Established UK network and global connections
- Developed multi-centre multi-disciplinary national network of clinicians and researchers focused on treating ACC
- Delivered recruitment ahead of milestones
- Made significant clinical progress
- ELLA01 - Defined new group of patients with specific mutated ACC and treated patients with specific targeted therapies
- ELLA02 - Identified and collected samples from patients with best response to immunotherapy radiotherapy
- ELLA03 - Completed pilot study of fresh human tumour sample analysis