Author: admin

What is your current role in EPAD?

As a Data Scientist at Aridhia, I support the development and maintenance of the Analytical Database for the EPAD Longitudinal Cohort Study. IQVIA securely transfer the collated project data from their EDC platform (Medidata Rave) to our digital research platform (AnalytiXagility) on a regular basis. We transform the data into the Health Analytics Schema (HAS), a database model designed by Aridhia to support consistent health analytics. The Analytical Database is then used to support several work packages within the EPAD project such as the Balancing Committee and the disease modelling work.

Aridhia also provide several AnalytiXagility workspaces – cloud-based, private research environments – where EPAD project partners can access the Analytical Database and collaborate around the data. I have been involved in the development of several prototype applications within this environment to support the Balancing Committee in their decision making, help track the recruitment to and growth of the EPAD LCS and provide interactive visualisations of the data in the Analytical Database.

What did you do prior to joining EPAD?

I have been at Aridhia now for 4 years. Prior to joining the company, I studied mathematics at the University of Edinburgh and so I really enjoy building modular solutions to address complex problems. I also enjoy diving into the specific analysis, visualisation and modelling tasks expected of a data scientist when the opportunity arises. Although this is often a small part of the battle, especially when healthcare data is involved.

During my time at Aridhia I’ve been involved in many projects including CHART-ADAPT, where Aridhia supported the use of high-frequency data to advance research and treatment for patients with traumatic brain injuries. I’m currently working closely with Great Ormond Street Hospital NHS Foundation Trust and Radboud University Nijmegen Medical Centre, where AnalytiXagility functions as the organisation’s digital research and innovation platform.

Tell us a bit about the institution/company/organisation you work for.

Aridhia was founded on the principle that to bring about real change, a multidisciplinary, collaborative and data-driven approach to innovation is vital. Early development of AnalytiXagility was funded by Innovate UK in 2013, and today the platform is commercially available as a fully-fledged collaborative digital research environment for biomedical research, precision medicine and healthcare teams.

We are headquartered in Glasgow’s Queen Elizabeth University Hospital, and from there the Aridhia team delivers open innovation services across the UK and Europe in collaboration with the NHS, research organisations, life sciences companies, IT service providers and patients.

What are your expectations from the EPAD project?

EPAD is an extremely innovative and ambitious project both within itself and in its initiative in adopting consistent and reproducible approaches to trial recruitment; integration of multiple data sources; and secure, ethical use and re-use of research data. I am delighted to be involved in the project as recruitment to the adaptive clinical trials begins with great potential for the advancement of our understanding of Alzheimer’s dementia and the development of preventive treatments. I also hope that the lessons learned, and approaches adopted within EPAD can be used to inform clinical trials in other domains, accelerating innovation within healthcare research.

Dr Vanessa Raymont (pictured) is a senior researcher and consultant psychiatrist working in the Department of Psychiatry at the University of Oxford and the Centre for Dementia Prevention at the University of Edinburgh. She is also a lead researcher for the EPAD project in Oxford. She was recently interviewed by Elder online magazine about assessing the risk of dementia and the powerful potential for research into prevention treatments.

We are glad that she mentioned the EPAD project aiming to develop an ongoing register of 3,000 people across Europe who will be followed up long-term.

“I think within the next few years there will be a big change in clinical practice and we will start being able to provide ‘risk assessments’ and a programme to reduce peoples’ risk of developing dementia.”

The interview is available here

Summary:

Biomedical research aimed at the development of therapies for chronic and late‐onset conditions increasingly concentrates on the early treatment of symptom‐less disease. This broad trend is evidenced in prominent shifts in contemporary dementia research. Revised diagnostic criteria and new approaches to clinical trials propose a focus on earlier stages of disease and prompt concerns about the implications of communicating test results associated with the risk of developing dementia when no effective treatments are available. This article examines expectations of the implications of learning test results related to dementia risk, based on focus group research conducted in the UK and Spain. It points to the extended social and temporal aspects of the dementia risk experience. Three key dimensions of this risk experience are elaborated: living ‘at risk’, represented in efforts to reduce risk and plan for the future; ‘with risk’, through vigilance towards cognitive health and earlier or prolonged contact with healthcare services; and finally, ‘beyond risk’ through a cessation of the self in its current social, legal and financial form. A virtual abstract of this paper can be viewed at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA

Read more here.

We are delighted to announce that March was the most successful month to date with 66 new research participants enrolled in the EPAD Longitudinal Cohort Study. The month of March was a fantastic month for the EPAD study and exceeded the mark set in February with 53 research participants recruited.

It is the second time this year that CITA (San Sebastian, Spain) is the trial delivery centre of the month. Congratulations to the team who screened 15 research participants in March for their inclusion in the EPAD study, making it the most successful centre that month.  A special mention goes to Bruno Vellas’s team in Toulouse (France) and Jose Luis Molinuevo’s team in Barcelona (Spain) who recruited respectively 12 and 11 new research participants in March.

2018 has had a great start! We already recruited 155 new participants in 2018 and opened several new sites in Europe. EPAD now has 13 sites enrolling and a total of 571 research participants screened. We are pleased that Paris Nord (France) became the latest addition to the EPAD family (pictured) in March and recruited its first research participant over the weekend. We expect four additional sites to become operational in France and UK in the coming days – stay tuned.

ABSTRACT:

Introduction: It is a challenge to find participants for Alzheimer’s disease (AD) prevention trials within a short period of time. The European Prevention of Alzheimer’s Dementia Registry (EPAD) aims to facilitate recruitment by preselecting subjects from ongoing cohort studies. This article introduces this novel approach.

Methods: A virtual registry, with access to risk factors and biomarkers for AD through minimal data sets of ongoing cohort studies, was set up.

Results: To date, ten cohorts have been included in the EPAD. Around 2500 participants have been selected, using variables associated with the risk for AD. Of these, 15% were already recruited in the EPAD longitudinal cohort study, which serves as a trial readiness cohort.

Discussion: This study demonstrates that a virtual registry can be used for the preselection of participants for AD studies.

Published Online in Alzheimer’s & Dementia

https://doi.org/10.1016/j.jalz.2018.02.010

On 22 March, The Lancet Neurology published an article entitled: “Frederik Barkhof: building bridges between disciplines” where EPAD and its sister project AMYPAD were featured. In this great article, Professor Frederik Barkhof, AMYPAD coordinator and member of the EPAD imaging scientific advisory group, was interviewed to share his early academic journey. The article can be downloaded here

Professor Frederik Barkhof has been awarded the 2018 John Dystel Prize for his outstanding contribution to multiple sclerosis research in the understanding, treatment and prevention of multiple sclerosis The EPAD consortium would like to congratulate him on this recognition.

For more information about the AMYPAD project visit: www.amypad.eu

For more information about the EPAD project visit: https://alzheimer.noemi.lu/

The AMYPAD project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 115952. The Joint Undertaking receives support from the European Union’s Horizon2020 research and innovation programme and EFPIA.

The EPAD project has received support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115736, resources of which are composed of financial contribution from the European Union’s Seventh Framework Programme (FP7/2007-2013) and EFPIA companies’ in kind contribution.

The IMI-EMIF initiative would like to invite you to its public symposium: ‘Liberating Evidence from European Health Data – the Achievements and Challenges of a Five Year IMI Project: EMIF’ that is to be held on the 18^th of April 2018 at Hotel Bloom, Brussels, Belgium.

This meeting will bring together a large variety of stakeholders to discuss the value of re-using healthcare data, how the new GDPR will affect the re-use of healthcare data, how we can better involve patients, a forward projection on the evolution of the healthcare data ecosystem, etc…. A high-level version of the agenda can be found here . Throughout the day, there will be ample opportunities for networking as we bring together stakeholders from other healthcare data consortia, representatives from IMI, the European Patient’s Forum and many others.

We are glad that our EPAD project will also be presented.

Participation in this event is free of charge, but we kindly ask you to register for the meeting online by April 1, 2018 at the latest by filling in this form. Please do not hesitate to register as spots are limited and registrations will be processed on a first come, first served basis.

More information on the venue can be found here. Please do not hesitate to contact us at jpraet1@its.jnj.com for more information.

We look forward to seeing you in Brussels.

We are very pleased to announce that the Barcelonabeta Brain Research Center (BBRC) was the most successful trial delivery centre (TDC) in February with 14 newly screened participants in the EPAD Longitudinal Cohort Study (LCS). Congratulations to the entire team (pictured)!

The European Prevention of Alzheimer’s Dementia initiative (EPAD) recruited its first Spanish research participant in June 2016 via BBRC (Barcelona, Spain). It was the first site to open in Spain and the second in Europe and has currently recruited over 145 participants. It is the institute where the Pasqual Maragall Foundation conducts all the scientific activities and the research projects to fight Alzheimer’s disease. This center is a high-level technological infrastructure at the service of the clinical research for the prevention of Alzheimer’s. For more information visit https://www.barcelonabeta.org/

According to José Luis Molinuevo, EPAD co-leader and Scientific Director of the BBRC, “We are happy to be part of EPAD and contribute to its success. We are thankful to the commitment of the Alfa Study research participants, who are determined to contribute to change the history of the disease, and undoubtedly, to our EPAD TDC team, both key actors to our success”.

EPAD has opened several new sites in recent weeks. We currently have 12 sites enrolling and 510 research participants screened of which 465 are currently enrolled. We are delighted that the EPAD LCS study recruited 53 new participants in February, making it the most successful month to date. There is a major drive to open new sites in the coming days and weeks as well as enhance recruitment – Stay tuned.

Pictured: from the left: José Luis Molinuevo, Laia Tenas, Anna Soteras, Anna Brugulat, Carolina Herrero, Laura Hernández, Oriol Grau, Tania Menchón and Montserrat Vila

Summary:

In clinical trials which target pathophysiological mechanisms associated with Alzheimer’s disease, research participants who are recruited based on biomarker test results should be informed about their increased risk of developing Alzheimer’s dementia. This paper presents the results of a qualitative focus group study of attitudes and concerns toward learning information about biomarker-based risk status among healthy research participants in the United Kingdom and Spain and people with dementia and their supporters/caregivers from countries represented in the European Working Group of People with Dementia of Alzheimer Europe. The study identified expectations related to learning risk status and preferences related to the content, quality, and follow-up of the disclosure process. The latter emphasize distinctions between risk and diagnoses, the importance of clear information about risk, and suggestions for risk reduction, as well as expectations for follow up and support. The implications of these preferences for practice are discussed. Providing details of research participants’ experience and views may serve as a guide for the development of processes for the responsible disclosure of Alzheimer’s disease biomarkers.

Read more on: http://dx.doi.org/10.3233/JAD-170813

On 27 February, our partner Alzheimer Europe (AE) held a successful lunch debate entitled “Will we be able to prevent Alzheimer’s dementia” at the European Parliament in Brussels (Belgium). The lunch debate focused on the prevention of Alzheimer’s disease (AD) and dementia through three key presentations.

The panel included a presentation by the European Prevention of Alzheimer’s dementia (EPAD) initiative. The EPAD Co-Coordinator Craig Ritchie (pictured), Director of the Centre for Dementia Prevention (Edinburgh, United Kingdom), looked at what the EPAD project can offer in terms of research into prevention. He also presented the progress being done by our project partners to build an European clinical trial platform to prevent Alzheimer’s dementia.

The prevention panel also included both speakers Kate Irving, Professor of Clinical Nursing at Dublin City University, (Ireland) and Edo Richard, Neurologist at the Academic Medical Centre, Amsterdam and Radboud University Medical Centre, Nijmegen (The Netherlands). Kate Irving spoke about reducing the risk of dementia by targeting modifiable risk factors in mid-life and about the lessons from the In-MINDD project, which promotes long term brain health and prevention to at least delay the onset of dementia. Edo Richard presented the European Dementia Prevention Initiative (EDPI), a project connecting European researchers and dementia projects.

The lunch debate looked at the potential for interventions in the earlier stages of dementia and dementia prevention. Several key research programmes of dementia prevention including EPAD are financed by European initiatives, illustrating the importance of addressing this field at European level. One of the highlights of the discussion was the agreement of all speakers that more could and should be done in the area of dementia prevention.

EPAD was delighted to have been involved in this lunch debate which brought together over 50 people including Members of the European Parliament (MEPs) Heinz K. Becker (Austria), Deirdre Clune (Ireland), Marian Harkin (Ireland), Rory Palmer (UK) and Keith Taylor (UK). All MEPs present or represented are current members of the European Alzheimer’s Alliance (EAA) – a non-exclusive, multinational and cross-party group of MEPs supporting AE and its members in making dementia a public health priority. We were glad to see that prevention is considered as a priority by the Members of the European Parliament.