New Alzheimer Europe Service Connects Patients with Clinical Trials

A new resource from Alzheimer Europe helps dementia patients more easily find new treatments through clinical trials without the medical jargon.

As a way to connect patients with more treatment options, Alzheimer Europe (AE) launched a new service called Clinical Trials Watch, which tracks clinical trials on drugs to treat and prevent Alzheimer’s disease and other dementia conditions.

CTW gathers trial information from places like the US and EU Clinical Trials Registries and gathers them in one place for the public, updating the list every three months. Currently, the service only includes phase III trials that are actively recruiting participants and are being conducted in at least two European countries.

“Information on clinical trials on Alzheimer’s and other dementias is currently difficult to find and often written in language that is difficult to understand,” AE Executive Director Jean Georges said in a statement. “We hope that our website will become a resource for anyone interested in clinical trials for the prevention and treatment of dementia. If successful, we hope to expand this resource to include phase II trials in the near future.”

Patients, their families, and caretakers can access the service and search for potential trials to participate in based on country, condition, and study.

When consulting the resource, users will be able to look further into each study to find information on the drug being tested, how to participate in the trial, qualifications for participating, where and when the study will be conducted, and what to share with patients’ doctors.

AE decided to limit the initial trials included in the service in order to work with a more manageable number of listings and only larger treatment opportunities at the beginning, Project Officer Dr. Ana Diaz explained in an email. Discussion around CTW began in 2014 because many of the existing trial resources were not accessible or easily understandable for patients, either because the information was out-of-date or heavy laden with medical jargon, Diaz said.

Working with pharmaceutical companies, other national Alzheimer associations, and members of the European Working Group of People with Dementia—a group of dementia patients from different countries ensuring AE’s work aligns with patient priorities—AE developed the resource in a dementia-friendly format.

To provide further value, a EWGPWD member reviews every study, the pharmaceutical companies provide feedback on the information provided, and dementia-friendly PDF versions of the information can be downloaded.

“With this new resource, we want to support people living with dementia in Europe in being truly informed about what research is available,” EWGPWD Chairperson Helga Rohra said in the release. “This more dementia-friendly format is a great step in making information on clinical trials more accessible and understandable for people with dementia and people at risk of developing dementia.”


Alex Beall

By Alex Beall

Alex Beall is an associate editor for Associations Now with a masters in journalism and a penchant for Instagram. MORE

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