Global webinars on research participation

On 10 May 2019, ADI held the third in our global webinar series: Let's Talk about Dementia Research: Maintaining hope when trials end.

This webinar featured a brand new panel, including:

  • Pippa Kelly, Author, dementia blogger, writer and public speaker
  • Howard Gordon, Global Advocate for Dementia and Rights
  • Dr Martin Traber, Global Medical Lead, Alzheimer’s Disease, Roche
  • Dr Philipp von Rosenstiel, Senior Medical Director, Clinical Development, Biogen
  • Dr Eliezer Masliah, Director of the Division of Neuroscience, National Institute on Aging (NIA)
  • Professor Craig Ritchie, Chair, Psychiatry of Ageing, University of Edinburgh and Director of the Centre for Dementia Prevention
  • Paola Barbarino, CEO Alzheimer's Disease International

Having provided an overview of why we need clinical trials in our first webinar, and considered some of the key barriers and enablers to participation in research in the second, this third webinar explored an important topical question: How do we maintain hope when trials end? 

In January 2019, pharmaceutical company Roche announced the discontinuation of their CREAD programme following the finding that crenezumab, a possible new drug treatment for Alzheimer’s disease, was not expected to meet its efficacy targets. More recently, in March 2019, Biogen and Eisai announced the decision to discontinue the global Phase 3 trials for ENGAGE and EMERGE, designed to evaluate the efficacy of aducanumab in people with mild cognitive impairment due to Alzheimer’s disease.

In the face of such news, challenging questions emerge: What does this mean in terms of the future of dementia research? Will other pharmaceutical companies follow their example and end trials, too? How can we keep dementia on the global agenda when the message we keep hearing is about ‘failed’ trials? 

Industry partners remain committed to finding a disease modifying drug. Equally, we know that those affected by dementia around the world want a cure and better access to care.

Our webinar on 10 May will enable pharmaceutical companies to tell their side of the story – the hopes and frustrations of conducting dementia research and clinical trials. It will also allow the public to ask important questions in order to better understand why trials are discontinued and what can be expected in the future. We will also explore the role of the media in how clinical trials are reported on, especially when they are discontinued. And consider our next steps – how can the public be more proactive?


The series

In November 2018, ADI began our Let’s Talk About Dementia Research global webinar series on dementia research and clinical trials. 

The idea of the series is to create a unique opportunity for the general public and Alzheimer and dementia associations to engage directly with health and social care professionals, as well as companies involved in dementia research and clinical trials.

As far as we know, no other webinar has provided such ‘public to professional’ access before.

Each webinar in the series aims to link and build upon the others. We hope to encourage lively debate and knowledge exchange; stimulating interest in research and trials to search for a disease-modifying treatment.

The series will conclude with a look ahead at overcoming some of these barriers and hopes for the future.

 

 

 

 

 

Webinar 1: Demystifying Trials, Access and Understanding

On November 21 2018, ADI held the first in a series of global webinars: Let’s Talk About Dementia Research: Demystifying Trials, Access and Understanding. The webinar built on the findings from a recent Generation Program global survey of 10,000 people and ADI’s World Alzheimer Report 2018, opening with an overview and discussion on what dementia research is. We asked:

  • Why do we need clinical trials and research (many now focusing on non-symptomatic volunteers or early/mild stages)?
  • What are the practicalities for clinicians ‘on the ground'?
  • What is the lived experience of families taking part in trials?

We heard from the pharmaceutical industry, researchers and clinicians conducting research and clinical trials, as well as primary care health professionals supporting patients and families. Most importantly, we heard stories of people living with dementia and their care partners about their lived experience. 

Follow-on webinars will drill down into issues that spark particular interest with our audience – both public and professionals. We will be guided by these interests organically, but hope to cover issues such as the divide of research opportunities between lower- and middle-income countries (LMICs) and higher income countries (HICs).

Webinar 2: Global Barriers and Access to Trials

On 8 February 2019, ADI held our second global webinar: Let's Talk about Dementia Research: Global Barriers and Access to Trials

This webinar compared the research available in low- and middle- income vs. high- income countries, building on the themes of our first webinar, and drilling down into new areas such as access to research, with particular focus on barriers, enablers, and opportunities.

We discussed practical options for people living in low- and middle-income countries who want to participate in dementia research and trials.

If you, or anyone you know, are interested in joining our webinars, please sign-up for email updates about ADI news, events and activities.

ADI would like to thank Roche for their generous contribution towards the running of our dementia research webinars, enabling us to open up the debate on this important topic.


Where next?