Greater Access to Alzheimer’s Trials Information

Today’s blog is co-authored by Jean Georges, Executive Director, Alzheimer Europe, and Kern Briggs, Lilly’s Senior Director for European Public Affairs.

 Every 65 seconds, a new person receives a diagnosis of Alzheimer’s disease, a disease that currently has no cure, nor ways to halt its progression. Statistics like this underscore the tremendous importance of making lives better for those affected today and in finding effective treatments in the future. While the global pipeline has about 100 medicines in development, solving the Alzheimer’s puzzle will require dedication from the whole research community.

 This week, Alzheimer Europe met in Glasgow from 20 to 22 October for its Annual Conference. The conference was attended by over 800 delegates from 39 countries and brought together all those affected by dementia, through living with the condition, caring for someone with the condition, or working in the field of dementia. Participants had the opportunity to share and exchange their experience and knowledge of the condition and to discuss how best to promote the autonomy and dignity of people with dementia.

 The conference also provided the opportunity to connect patients and carers with the wider research community. A joint Alzheimer Europe and Lilly symposium provided a much needed overview on the various clinical trials currently being conducted in Europe on dementia as well as an update on the clinical trial process.

 Alzheimer Europe highlighted a number of shortcomings with the European clinical trial registry which is difficult to access for people with dementia and carers and presented its project of developing a dementia-friendly clinical trials database by involving actual people with dementia in the review process of the information provided. This would allow patients and carers to access understandable information on the latest dementia-related clinical trials. Access to this information can bring the research community and all those affected closer to solving the Alzheimer’s puzzle.

 Lilly also intends to address the problem of access to information on trials taking place.  Enrolment levels remain low, hampering our understanding of causes as well as the discovery of future treatments. Lilly has developed a new API (application programming interface) tool, which will help interested patients identify trials taking place in their area.

 One of the biggest obstacles remains subject recruiting for clinical trials. The underlying issue is a low and late diagnosis rate and low disease state understanding. It is our hope that more people will consider clinical trials as more people are diagnosed in a timely and accurate manner and the clinical trial process is better understood.

 While there has not been a new medicine in the last decade, we have made significant progress in our disease understanding which will hopefully bring us closer to much needed scientific and clinical innovation for Alzheimer’s disease research. We owe it to the 8.7 million people in the European Union currently living with a form of dementia.

 Therefore, together we welcome the growing recognition of dementia as a public health priority on a national and European level and call upon European governments and institutions to recognize the critical role that they have in finding solutions for people living with dementia.