Spotlight on EPAD study site Fundació ACE

Fundació ACE is a non-profit entity at the service of people with Alzheimer’s disease or other dementias, and their families. It is also one of the centres behind the European Prevention of Alzheimer’s Dementia Consortium (EPAD).

The team of Dr. Mercè Boada (who is principal investigator of the EPAD project in Fundació ACE and MOPEAD project Coordinator) started recruiting participants for the EPAD Longitudinal Cohort Study in June 2019. So far, they have already recruited over 60 people. EPADs communication team caught up with her team and asked them a few questions about their best practices and recruitment strategies.

Do you have any “top tips” for running the Longitudinal Cohort Study efficiently at your site that you would like to share?

We believe that the success of the recruitment relies on the appropriate coordination between our Memory Unit and the Clinical Trials Unit. Continuous communication between both departments and adaptability as well as the willingness to find new synergies are important factors to take into account. Furthermore, we consciously invest a lot of time in the pre-selection process and in the informative visits for possible candidates to whom we explain purposefully the importance of their role in research.

Another highly successful activity in line of efficiently running the LCS is the Open House Initiative (OHI), where we offer free cognitive evaluations for individuals from the community worried about their memory. This initiative allows us to have a better chance of finding people willing to participate in research, as they have proactively asked for the test.

We have investigated OHI strategy in another IMI project called Models of Patient Engagement for Alzheimer´s Disease (MOPEAD), finding high rates of engagement using this approach. We recommend its implementation for early detection of mild cognitive impairment and preclinical Alzheimer’s disease.

How are you able to find suitable subjects for the cohort?

Considering the current inclusion criteria, our main source of participants is the clinical practice of our institution. Thus, last year we evaluated 794 patients diagnosed with mild cognitive impairment that fulfilled the main inclusion criteria of the current algorithm. In addition, we have an extensive database of patients that has been reviewed for the recruitment process. As mentioned before, the Open House Initiative is another effective strategy to find subjects interested in collaborating in Alzheimer´s disease research.

Any country teleconferences/meetings you are organizing and how frequent?

Due to our recent inclusion in the project we haven´t organised any country teleconferences or meetings yet. However, we would be very keen to organise and participate in one, as we think it´s a very good idea for the future.

Any past or future events/conference which have been beneficial for recruitment into EPAD?

We will keep conducting the Open House Initiative to increase our recruitment potential, in addition to invite the patients that are evaluated in our Memory Unit.

Any activities in terms of participant engagement?

We are planning to participate in the EPAD participant´s platform, because it´s in our interest to enhance the role of the participants and listen to their opinions and necessities in order to adapt our practice using a patient-centred approach.

This article has been provided by the EPAD project: