World Dementia Council hosts its 2021 Summit, “Looking to the future: the dementia landscape”

06/12/2021

On 6 December, the World Dementia Council (WDC) held its 2021 Summit, under the banner “Looking to the future: the dementia landscape”. Originally conceived as an in-person, hybrid event in London, the Summit was reorganised as a virtual-only event due to travel restrictions and COVID safety concerns. The Summit was focused on dementia science and research and drew and was attended by over 150 stakeholders from industry, academic institutions, patient associations and international initiatives. Dr. Cindy Birck and Dr. Angela Bradshaw represented Alzheimer Europe at the Summit. A further event will be held in January 2022, addressing awareness, prevention and care.

Discussions at the Summit were framed around three key topics: data sharing, innovation and incentives, and research policy & funding. Sessions on these topics were interspersed with perspectives and presentations by policymakers, including Dr. Catherine Berens of the European Commission, Ulrik Vestergaard Knudsen of the OECD, and Devora Kestel of the WHO. The Summit was chaired by Prof. Philip Scheltens (Chair of the WDC) and Lenny Shallcross (Executive Director of the WDC), and was sponsored by Johnson & Johnson and Eli Lilly. The first session addressed the topic of data sharing, and was chaired by Dr. Niranjan Bose, Managing Director of Health & Life Sciences at Gates Ventures.

First, Dr. Pierre Meulien (Executive Director of the Innovative Medicines Initiative/IMI) presented an overview of the IMI neurodegeneration portfolio, underlining the breadth of data being generated, and describing the European Platform for Neurodegenerative Diseases, a new IMI project that is aiming to facilitate data and sample sharing. Then, Prof. John Gallacher (Director of Dementias Platform UK) described the abundance of data being generated through dementia research, explaining that researchers are very keen to share and reuse data, but are impeded by technical and financial challenges. Next, Prof. Miia Kivipelto (Karolinska Institutet) spoke about the FINGER network, and the data that are being generated through different projects and centres. She explained that there is a need for more effective collaboration as a stepping stone towards data sharing, and that there is value in sharing insights and good practice as well as data.

The second session was focused on innovation and incentives, and the role of funders, regulators and industry in developing the dementia research landscape. Chaired by former FDA commissioner Dr. Peggy Hamburg, this session included presentations and remarks from Prof. Fiona Wyatt, Chair of the UK Medical Research Council (MRC), Dr. Hussein Manji, Global Head of Johnson & Johnson Science for Minds, and Dr. Greg Moore, Corporate VP at Microsoft. Prof. Fiona Wyatt showed the substantial financial investment in research, and the extent of clinical data being generated in the UK, outlining the ambition to accelerate the pace of translation and build on existing initiatives. Dr. Manji then described how Science for Minds is creating an open research culture to tackle areas of unmet medical need, by addressing societal aspects alongside science and innovation. The final panelist, Dr. Greg Moore, focused on technical and cloud-based innovation and its role in enabling data sharing, helping scientists to unlock the full potential of data for the benefit of patients.

The third and final session of the Summit was entitled “Are we on track?” and was co-chaired by Prof. Philip Scheltens and Dr. Maria Carillo (Chief Scientist, Alzheimer’s Association). The session addressed some important questions: is the research and policy landscape facilitating the development of new treatments? Is there enough global coordination? Is funding sufficient, and are the right projects being funded, or are new funding models required? Commenting on these questions were Dr. Richard Hodes (Director of the National Institute on Aging/NIA), Dr. Paul Stoeffels (Chief Scientific Officer, Johnson & Johnson), Prof. Mary Sano (ICAHN, Mt. Sinai, New York) and Prof. Julie Williams, Director of the UK Dementia Research Institute. Panelists discussed key challenges and barriers to effective dementia research and innovation, including fragmented global funding infrastructures, and spoke about new initiatives being developed to address these challenges. Chris Roberts, Chair of the European Working Group of People with Dementia, made one of the final interventions in the session, highlighting the importance of effectively communicating research, and the value of participating in research, to address misconceptions and to help overcome fears. He also emphasised the value of involving people who are experts by experience in developing communications and conveying messages to the dementia community.