Engaging patients to advance research in Alzheimer’s disease


Craig Shering, Director Global Products and Jamie Mullen, Global Clinical Lead

Following the International Conference on Clinical Trials for Alzheimer’s disease (CTAD) 2017, Craig Shering, Director Global Products and Jamie Mullen, Global Clinical Lead, discuss the importance of patient engagement in supporting earlier identification of Alzheimer’s disease and its potential to support research.

Alzheimer’s disease is a serious and growing medical challenge, with around 47 million people affected by Alzheimer’s or related dementia, and that number is anticipated to rise to approximately 132 million by 2050.1 Despite continuing efforts, there are no disease modifying therapies available2 and the pursuit for new scientific breakthroughs continues.

The importance of patient engagement

Patient engagement has an important role to play in improving the future of Alzheimer’s disease treatment for current and future patients. Too often, a lack of knowledge and potential fear of the implications of an Alzheimer’s disease diagnosis create barriers for loved ones and care providers leading to a delayed diagnosis of Alzheimer’s disease.

Working closely with patients, and hearing and sharing their experiences, can reduce the stigma associated with Alzheimer’s disease and create an environment where patients and families are more receptive to clinical trials, symptomatic treatment, and psychosocial interventions .

Increasing the role of patients in research

Although the number of clinical trials in Alzheimer’s disease has expanded in recent years,3 there has not been a proportional increase in the number of patients identified as potential candidates for these trials, leading to slow recruitment.4 In fact, 80% of studies in Alzheimer’s disease are delayed because too few people enroll.5 This is particularly true as investigators seek to intervene earlier in the disease, including at the pre-symptomatic and mild cognitive impairment (MCI) stages.

AT CTAD 2017, AstraZeneca moderated a panel discussion to examine various initiatives to screen, identify and engage patients in research earlier. As the focus on future treatments in Alzheimer’s disease shifts to earlier diagnosis, the potential to work with patients in an earlier stage of disease is an important opportunity to deepen our understanding of this condition and develop new treatments to improve patient outcomes.

Individuals with earlier-stage disease are generally seen in primary care settings and may not self-identify, especially in the pre-symptomatic stage. Better mechanisms are needed to identify these individuals in the general population and in primary care settings, communicate the nature of clinical research, expedite evaluation at the research site, and ensure good communication with primary care providers. We are excited to learn from a diverse set of patient engagement approaches during CTAD to improve prescreening instruments for patients and fuel further research for better treatments in the future.

Initiatives to increase patient engagement

There are multiple efforts underway by patient groups and research organizations to enhance patient involvement in Alzheimer’s research:

  • Alzheimer’s Prevention Registry: The registry unites leading researchers with potential participants who are interested in taking part in Alzheimer’s studies. Hundreds of thousands of people have already joined, many of whom have chosen to take part in prevention studies now in progress.6
  • Alzheimer’s Association’s TrialMatch: a free clinical study matching service that connects individuals with Alzheimer’s, caregivers and healthy volunteers to current studies.
  • Models of Patient Engagement for Alzheimer's Disease (MOPEAD): an EU initiative to assess different patient engagement models, examining the relative advantages of four alternative screening mechanisms for earlier identification of patients.

Raising awareness of the signs of early Alzheimer’s disease and engaging patients and communities are important steps toward achieving earlier diagnoses and enhance research in earlier stage disease. This not only benefits current patients with Alzheimer’s disease but is crucial to unlocking new research insights to benefit future patients.


1 WHO. Dementia infographic “Dementia a public health priority”. Available from: http://www.who.int/mental_health/neurology/dementia/infographic_dementia.pdf Accessed 10/27/17

2 WHO. Dementia fact sheet. Available from: http://www.who.int/mediacentre/factsheets/fs362/en/ Accessed 11/07/17

3 Cummings JL, Morstorf T, Zhong K. Alzheimer’s disease drug-development pipeline: few candidates, frequent failures. Alzheimer's research & therapy. 2014 Jul 3;6(4):37.

4 Fargo KN, Carrillo MC, Weiner MW, Potter WZ, Khachaturian Z. The crisis in recruitment for clinical trials in Alzheimer's and dementia: an action plan for solutions. Alzheimer's & Dementia. 2016 Nov 1;12(11):1113-5.

5 Alzheimer’s prevention registry. Why Join a Research Study?. Available from: https://www.endalznow.org/about-the-registry/why-join-research-study Accessed 11/7/17

6 Alzheimer’s prevention registry. How The Registry Works. Available from: https://www.endalznow.org/about-the-registry/how-the-registry-works Accessed 11/7/17