Background/Context
The Neurodegeneration Initiative: A charitable organisation supporting the delivery of the Dame Barbara Windsor Dementia Goals programme
- There are currently one million people in the UK living with dementia – a number expected to rise to 1.4 million by 2040. Dementia is the leading cause of death in England and one in two people will be directly affected by it – either they will care for someone with the condition, develop it themselves, or both.
- For the first time ever, the Dame Barbara Windsor Dementia Goals programme brings together world leading experts within industry, government, charities and academia, to tackle the challenges in development and rolling out treatments and ensure we can get treatments and diagnostics to patients as soon as possible.
- First launched by the Prime Minister in late 2022 and reiterated in the recent 10 Year Health Plan and Life Sciences Sector Plans, the programme aims to realise a new generation of precision dementia therapies and solutions for the UK – by accelerating innovations in biomarkers, clinical trials and implementation. With around £150m government funding aligned with it, the programme is Chaired by leading experts in the field Hilary Evans-Newton, Chief Executive of Alzheimer’s Research UK and Nadeem Sarwar and run by the Office for Life Sciences, with support and funding from DHSC, Innovate UK, MRC and NIHR.
Investments to Date
The Dame Barbara Windsor Dementia Goals programme has already invested over £100m into biomarker studies and clinical trials infrastructure.
The Neurodegeneration Initiative – Building a Charity to Support the Programme
With £44m remaining to be allocated, the programme is now establishing the Neurodegeneration Initiative (NI) with the ambition to attract an equal amount of match funding from strategic partnerships with Life Sciences Sector and Health Foundations. The NI will be a globally unique, not-for-profit, industry led public-private partnership, set up as a Charitable organisation that will work together across government, global industry, academia, the NHS and other medical research charities.
The over-arching purpose of the NI is to accelerate access to and involvement in trials, drive the development and adoption of innovation and realise the delivery of preventative and therapeutic innovations for people with dementia/neurodegeneration.
The strategic priorities of the NI are aligned to the programme and are to 1) Discover, validate and operationalise a suite of clinically actionable and decision-enabling biomarkers 2) Enhance existing infrastructure for clinical research and pilot innovative tools and approaches for accelerated trial initiation and increased patient participation and 3) alignment of academic and commercial research, clinical practice and regulatory frameworks to prepare health-systems to implement innovations for the benefit of patients, now and in the future.
Wording from the 10 Year Health Plan, referencing the NI
“In collaboration with partners across the public, private, and charitable sectors, we will support the development and roll out of high impact medicines through the Healthcare Goals programme, including in cancer, obesity, mental health and dementia. Through the Dame Barbara Windsor Dementia Goals programme, we intend to set up a public-private partnership to accelerate development and implementation of new dementia therapies. We will also be more proactive in preparing the system to implement medicines.”