RADAR-AD researchers: Interview series “Behind-the-scenes”, part 4

In order to showcase the variety of work we do in RADAR-AD, we decided to dedicate the following news items to several RADAR-AD researchers. We talked to them about the work they do for the project, what excites and challenges them the most, especially at times of the present COVID-19 pandemic, and how they see the impact of our project for the wider field of Alzheimer’s research.

We spoke to Gul Erdemli from Novartis who is a sub-co-lead of Work Package 3 within RADAR-AD.

What is the focus of your work within the RADAR-AD project?
I am sub-co-lead in WP-3, which focuses on the communications with regulatory authorities, patient associations, payers and ethical boards. My expertise is in regulatory affairs field.  Together with my colleagues in the WP-3, I lead the interactions with regulatory authorities, health technology assessment bodies, and payers to obtain feedback on challenges associated with the use of technology-enabled functional endpoints in the treatment of Alzheimer’s disease. 

What do you enjoy the most about your work on the project?
I thoroughly enjoy the collaboration the RADAR-AD project provides. Some of the best European academic centres and leading pharmaceutical companies are participating in the project and we have excellent synergies among academic and pharmaceutical industry partners. This provides invaluable learning experiences for all parties involved. I am also very excited about the potential of remote monitoring technologies. These technologies allow us to measure the functional decline in a real-world environment (e.g. patients’ home) rather than in a doctor office and therefore, likely to provide more accurate and sensitive assessment of functional decline seen in Alzheimer’s disease.

What is challenging about your work?
Nothing that one cannot overcome. Distant collaborations and limited face-to-face opportunities can be challenging but effective use of technologies and the enthusiasm for the collaboration make the work effortless.  

What do you think is the importance of the project for the wider field of Alzheimer research?
It is anticipated that remote monitoring technologies provide, much needed, objective, sensitive and accurate measurements of function in Alzheimer’s disease patients.  The results of RADAR-AD study will therefore, facilitate drug development by establishing a roadmap for implementation of novel digital measures in future clinical trials as well as research in disease progression and pathophysiology. Improved measures and monitoring of function will also help better care of patients by earlier interventions.

How has the COVID-19 crisis impacted your work? How have you adapted to the new circumstances created by the pandemic?
Inevitably, the COVID-19 pandemic slowed down the progress of the project. The clinical study is on hold until the COVID-19 crisis is resolved. The clinical team is progressing with ethic committee reviews and site initiation visits by videoconference, but significant delays in all activities are expected.

I personally can perform my work by working remotely. I have never worked from home for such a long time. Although it was difficult in the beginning, as time goes by I am getting used to it and feeling rather lucky that I can work from home and everybody in my family are well. 

It is almost impossible not to be affected by how the world around us changed so suddenly. However, I am very hopeful that we will learn valuable lessons from this very unfortunate event and scientific solutions such as vaccines or treatments will be available soon.  

Yoanna Daskalova works as a Project Communications Manager at Lygature in Utrecht, The Netherlands. Within the RADAR-AD consortium she is leading the work on communications and dissemination.

What is the focus of your work within the RADAR-AD project?

I am responsible for the development and implementation of the communication and dissemination strategy for RADAR-AD. My responsibilities entail, among others, creating communication materials which describe the research done in the project, explain our goals and provide information on our consortium. I also report on a regular basis on newsworthy project updates for the online channels of the project such as our website and social media pages in order to raise awareness about the project and keep our audiences engaged with our progress and objectives.

What do you enjoy the most about your work on the project?

I especially enjoy the communication with partners, who are of diverse backgrounds and fields. I am in touch with partners’ representatives from industry, academia, patient organisations and others who have different experiences, perspectives and interests and valuable input at all times. This makes for an enriching and intensely learning experience that is invaluable to me. I learn many new things about the disease area and technologies - their potential and application in the project, ethical and social considerations about the use of technologies, and many other topics with help with understanding the field and the science behind the research.

What is challenging about your work?

Oftentimes it can be challenging to translate the complexity of the scientific research done in RADAR-AD in an accessible language. I strive to provide regular updates of our study progress on the project website and social media pages and keep our audiences informed on our goals and approach through informative communication materials. These pieces reach not only the scientific community and relevant to the project stakeholders, but also the general public, people living with Alzheimer’s disease and their carers, as well as policy makers and funders. That being said, I need to tailor our messages for a mixed audience which is, in many cases, not acquainted with the intricacies of the research and science behind the project. Therefore, I sometimes struggle with providing just enough of the right details and not too much of the confusing and more complex ones, so to speak.

What do you think is the importance of the project for the wider field of Alzheimer research?

I believe that the project is highly relevant and therefore very important in the present situation. Integrating remote measurement technologies in assessing and caring for people living with Alzheimer’s disease is especially topical and crucial in the current COVID-19 pandemic. In my opinion, gathering data in a remote way represents a promising approach to monitor people’s health in their own home environment and in real time. This would be particularly beneficial in the ongoing socially distant times when the need to measure disease symptoms from afar is of high urgency.

How has the COVID-19 crisis impacted your work?

In the beginning of the crisis many events and project-related meetings were moved online or delayed. The delays definitely affected the amount of news we had to share on the project with our audiences. However, I launched interview series with our researchers and used this time to acquaint our audiences with the variety of work done in the project, give a human face to it and showcase that a lot of the research can move on despite the limitations created by the pandemic. Moreover, the start of our study was postponed with several months which delayed the inclusion of our first participant. Nonetheless, they have now been involved in our clinical site in Greece as of the beginning of this month.

Personally, I have been used to working from home and I actually welcomed 2,5 more free hours a day which I did not spend on commuting! I miss the social and spontaneous interactions with my colleagues at the office so I try to have a virtual coffee with them and talk more informally as much as possible online.

How have you adapted to the new circumstances created by the pandemic?

I am very happy with the care and opportunities provided by my organisation – Lygature, which made the transition from an office to a home working environment easy for me. I was able to equip my home office with electronics and furniture which made my work much easier. I also make sure to take at least two walks a day – in the morning and in the evening, and simulate the commuting routine I’ve gotten used to. Next to that, I have more time to do sports almost every day which helps to keep me energised, relaxed and focused at all times. Moreover, eating well is easier now that I have more time to cook and think about what I’d like to make. All this actually inspires me to enjoy working at home a lot as it leaves more time to spend on keeping healthy.