New paper on the EPAD participant panel experience
This month, we get to know the Fundació ACE centre behind EPAD. The team of Dr. Mercè Boada (principal investigator of the EPAD project in Fundació ACE) began recruiting in June 2019 and has currently recruited over 60 participants in the EPAD Longitudinal Cohort Study (LCS). We caught up with her team and asked them a few questions about their best practices and recruitment strategies.
“EPAD is an innovative and highly ambitious project because it is based on the belief that we’ll get to preventively treat Alzheimer’s disease. This message aims to change the concept of prediction or prevention to the concept of healing.”, said Dr. Mercè Boada.
Any top tips for running the LCS efficiently at your site? 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.
Pictured: Maitee Rosende-Roca, Montse Alegret, Marta Ibarria, Mercè Boada, Charo Cuevas, Carla Abdelnour, Mar Buendía, Carmen Chaler, Liliana Vargas, Lluís Tárraga, Alba Benaque, Esther Pelejà, Adela Orellana, Isabel Hernández, Ana Mauleón, Laura Montrreal, Anna Calvet, Núria Aguilera, Ángela Sanabria, Asunción Lafuente, Marta Marquié, Laia Cañada, Verónica Ferrer, Silvia Gil, Mariola Moreno, Mercedes González, Ester Esteban, Juan Pablo Tartari, Sara Jofresa, Maribel Ramis, Goretti Brunet, María Jesús Allué, Isabel Rodríguez, Marta Lozano, Silvia Preckler, Susana Diego, Ahmad Safiya, Alba Pérez, Ana Pacho, Pilar Canyabate, Miren Gurruchaga y Salvador Almagro.
EPAD Update:
We currently have 27 sites across Europe enrolling and almost 2,000 research participants screened. Congratulations for the site Santander (Spain) for screening their first research participants in November. We are pleased that this site became the latest addition to the EPAD family. In addition, EPAD is pleased to announce the release of a new publication “The European Prevention of Alzheimer’s Dementia (EPAD) Longitudinal Cohort Study: Baseline Data Release V500.0”. This paper describes the baseline data from the first 500 research participants (V500.0) to assist current and future researchers with their analysis. V500.0 has been collected, quality checked, released and is now available via secure online tools. To access the data, you will need to make an online request by following this link at http://www.ep-ad.org/erap where you will find a variety of resources to support your research.
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