- From a sample of over 10,000 adults, 62% are worried that they may develop Alzheimer's disease and 91% believe the solution to tackling diseases lies in medical research
- 79% are willing to take part in medical research but three-quarters (75%) have no idea how to get involved
- This World Alzheimer's Month, in association with Alzheimer's Disease International, Novartis, Amgen and Banner Alzheimer's Institute are raising awareness about how to get involved in Alzheimer's research
Alzheimer's is the leading cause of dementia, a disease affecting 50 million people worldwide and this number is expected to triple by 2050. The survey of more than 10,000 people across 10 countries revealed that 91% believe the solution to tackling diseases lies in medical research and 79% are willing to participate. However, three-quarters (75%) have no idea how to get involved in medical research. In addition, 78% of adults are willing to get genetically tested to identify their potential risk of developing Alzheimer's.
"At present, there is no cure and limited treatment options for Alzheimer's, but this survey clearly shows that people are willing to participate in research to help treat and to hopefully find a cure," said Paola Barbarino, Chief Executive Officer at ADI. "We need to demystify and remove awareness barriers to participation in medical research, making all suitable candidates aware of how they can get involved."
Worldwide, more than 400 clinical studies are recruiting in Alzheimer's. However, slow enrollment is a costly and common obstacle that undermines medical research. There is a need for more people to volunteer to advance scientific discovery.
"The results from this survey clearly demonstrate the need to raise awareness about clinical studies globally," said Pierre N. Tariot, MD, director of BAI and co-director of the Alzheimer's Prevention Initiative (API). "Aside from funding, the greatest challenge in finding a way to treat, slow, or prevent Alzheimer's is the recruitment and retention of study participants. Scientists are making great progress in the fight against this disease, but an estimated 80% of studies fail to meet recruitment goals on time, which delays critically important research."
September 2018 marks the 7th World Alzheimer's Month and represents a chance for people to raise awareness, fundraise and find out more about how they can participate in research. In addition to the global survey results, ADI will also launch their World Alzheimer Report 2018 entitled The state of the art of dementia research: new frontiers, which looks at the hopes and aspirations, the barriers and enablers to improving dementia research globally. More information on the report can be found here www.alz.co.uk/worldreport2018.
"Novartis thanks all the participants who took part in this important survey. We have served patients in Neuroscience for over 70 years and believe that a focus on prevention is vital to safeguard future generations," said John Tsai, M.D., Global Head Drug Development and Chief Medical Officer for Novartis. "This survey highlights that greater awareness and support is needed. This is to ensure people have sufficient knowledge about clinical research studies to make a well-informed choice about getting involved, so that together we can reimagine Alzheimer's care for the future."
Novartis, Amgen and BAI are sponsors of the API's Generation Program, which is evaluating investigational treatments to help prevent or delay the onset of Alzheimer's. The Program is enrolling volunteers aged 60-75 who are at higher risk of developing Alzheimer's but do not currently have or show signs of the disease. Information can be found at www.generationprogram.com. Learning about increased genetic risk as part of a clinical study can result in a unique emotional response; pre- and post-test genetic counselling is often recommended to help manage these responses and provide information on implications for the individual and their family.
Information about clinical trials is widely available online and from local patient advocacy groups. Details of Alzheimer's clinical studies can be found on the ADI website www.alz.co.uk/clinical-trials/find and the Alzheimer's Prevention Registry www.endALZnow.org/. Studies can also be found within the ClinicalTrials.gov study database, https://clinicaltrials.gov, under the search criteria 'Recruiting' and 'Alzheimer Disease'.
About the survey
The survey was conducted online by The Harris Poll on behalf of Novartis, Amgen and Banner Alzheimer's Institute, among 10,095 adults 18+ living in Argentina, Canada, China, France, Germany, Italy, Japan, Spain, the UK and the US. The survey was conducted between July 25 and August 21, 2018. Figures for age by gender, income, education, race/ethnicity (Canada and US only), region, size of household, marital status, and employment status were weighted where necessary to bring them into line with their actual proportions in the population.
The Alzheimer's Prevention Initiative (API) is an international collaborative research effort formed to launch a new era of Alzheimer's prevention research. Led by Banner Alzheimer's Institute, the API conducts prevention trials in cognitively healthy people at increased genetic risk for Alzheimer's disease. It will continue to establish the brain imaging; biological and cognitive measurements needed to rapidly test promising prevention therapies and provide registries to support enrollment in future prevention trials. API is intended to provide the scientific means, accelerated approval pathway with the cooperation of the regulatory agencies and enrollment resources needed to evaluate the range of promising Alzheimer's prevention therapies and find ones that work. For more information, go to www.alzheimerspreventioninitiative.com
About Amgen and Novartis Neuroscience Collaboration
In August 2015, Novartis entered into a global collaboration with Amgen to develop and commercialize pioneering treatments in the field of migraine and Alzheimer's disease.
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 Data on file. August 2018.
 Dementia fact sheet December 2017; World Health Organization: www.who.int/news-room/fact-sheets/detail/dementia. Accessed August 2018.
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