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Patient involvement in early Parkinson’s research

Chiara Vona — Thu, 06 Jul 2023 07:12:22 +0000

Patient involvement in early Parkinson’s research

Nick Francis, Global Communications

Chiara Vona Thu 06/07/2023 - 09:12

In November 2021, ��ֳ�, Parkinson’s UK, and the Parkinson's Foundation in the U.S., announced that they had joined forces to establish a Patient Engagement Council for Parkinson’s Research (PECPR), building upon existing work they had been doing together for many years. The overarching aim of the group is to partner with patients, carers, and patient organisations early, strategically, and consistently to improve research and early clinical development. Integral to the PECPR are patient experts who represent the wider Parkinson’s community perspectives and have a keen interest in early research and development.

Meet Harold, one of those patient experts, below:

Harold’s Story: I want patients to see that their life does not end with the diagnosis of Parkinson’s Disease. In fact, it’s just beginning.

I first started experiencing what I now know were symptoms of Parkinson’s disease six years ago. I was on a family holiday in Croatia and felt pain in my shoulder. When I spoke to the doctor, I was misdiagnosed with frozen shoulder syndrome. The doctor wondered if I was too stressed and advised me to take it easy. But after a few months, I had a tremor in my hands which I found was getting in the way of my everyday activities. After a long road of specialist appointments, I was diagnosed with Parkinson’s Disease in 2018.

I was insecure about what this news might mean for my family and my career, so I kept my symptoms private. But after hearing the diagnosis, I had a moment of relief. It wasn’t life-threatening, and it was something I was ready to tackle.

Now, as well as focusing on my own health, I’m passionate about helping the wider Parkinson’s Community. I’m proud to be part of the Patient Engagement Council for Parkinson’s Research (PECPR), and I hope to use that role to raise awareness. It’s no mean feat to be a representative for the Parkinson’s community. The community is huge, and no two experiences are the same.

In my role, I try to give guidance on how patients look at this disease and what scientists can focus on when thinking about developing new treatment options.

We can be proactive as a Parkinson’s community and play a role in finding new possibilities to cope with this disease, whether that be in therapies or education. Nobody knows better how to deal with Parkinson’s than the patients themselves.

When I think about what I’d like to see for the future of Parkinson’s awareness, I’d like those with Parkinson’s disease to see that their life does not end with a diagnosis. In fact, it’s just beginning.

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New approaches in epilepsy research

Vanco Vlastimil (��ֳ� S.A.) — Tue, 13 Jun 2023 11:01:22 +0000

New approaches in epilepsy research

Stefanie Dedeurwaerdere, Epilepsy Discovery Research

Vanco Vlastimi… Tue 13/06/2023 - 13:01

At ��ֳ�, we have been leaders in the research and development of treatments for epileptic seizures for more than 20 years. In 2022, more than 2.6 million people living with epilepsy benefited from our anti-seizure medications, and our commitment to providing new solutions for those in need continues. We are working towards a future where we hope to impact the underlying causes of the epilepsies with disease modifying therapies which can change the course of the disease.

It is important to recognise that there are multiple types of epilepsy. In fact, we now more commonly refer to epilepsy as the ‘epilepsies,’ indicating that it’s not really a single disease. In addition, for many people — particularly those living with certain, rare epileptic syndromes — seizures are not the only impactful symptom.

As an industry, we've been very focused on seizures, which for so many patients, continues to be top of mind. But it’s essential that, in our focus on seizure suppression, we don’t neglect what changes in the brain are often underneath those seizures.

When we understand the root cause of certain epilepsies, it opens opportunities to target the underlying mechanisms that impact these diseases, through new treatment approaches.

To further increase our understanding, we've been collaborating with universities on building one of the largest analyses of human brain tissues from epilepsy patients in the world, including > 200 samples. This in-depth study allows us to really comprehend the world of epilepsies as a global brain map, to quantify fully the different subtypes of epilepsy, understanding what they may have in common and what could be unique to specific conditions.

For complex epilepsies, where mechanisms are less understood, the situation is more challenging. Here, we are building on genetics to help understand universal disease mechanisms across the epilepsies.

In addition, we have also developed an artificial intelligence computational framework in collaboration with various academic partners to investigate disease mechanisms and processes that helps us to identify novel areas for future therapeutic entry points.

Our digital innovations are also key in allowing our patients to have a louder voice, to feel more empowered, and to know and understand their disease more thoroughly. The combination of more diverse treatment options and a more informed patient population will help bring us in an era where the treatments will be much more personalized, impacting patients’ lives in a more significant way.

Our commitment to epilepsy research has never been stronger, and as the science advances so does our curiosity. We are hopeful for the future, and we will learn and refine our thinking as we progress.

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epilepsy neurology patients research innovation

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Our hope for Parkinson’s research

Vanco Vlastimil (��ֳ� S.A.) — Tue, 25 Apr 2023 15:45:25 +0000

Our hope for Parkinson’s research

Martin Citron, Neurology Early Solutions

Vanco Vlastimi… Tue 25/04/2023 - 17:45

This month is Parkinson's Awareness Month, and it’s a field we have been involved in for many years. In that time, a lot has changed about the way we study Parkinson’s disease, the way we work with patients, and the way we understand their daily realities.

For us at ��ֳ�, those changes have been deliberate, and they’re part of a three-step strategy that drives everything we do in Parkinson’s research.

Our first driving force is one of patient-centricity. It’s something that’s talked about in our industry, but for us at ��ֳ�, we are really trying to understand in great depth the impact that Parkinson’s has on people living with the condition and what their needs are. That starts first with an understanding of what they are going through day to day.

What’s key in understanding our individual’s experiences is that we’re not just looking at a movement disorder, but a broad systemic disorder with non-motor symptoms and many other aspects beyond the symptoms which are so often observed, something in the past that has been under appreciated.

The second driver is deep understanding of the pathobiology behind Parkinson’s, which allows us to pursue differentiated hypotheses of several mechanisms in parallel.

Our final element which is vital in our Parkinson’s strategy is the breadth of the scope of what we are trying to achieve and the important partnerships we're pursuing to make this happen. Vital relationships we have with patient and research organizations not only get us closer to patient needs, but also closer to our goal of delivering innovative medicines to suit these needs.

So, as we mark Parkinson’s awareness month, and look towards another quarter-century of innovation and awareness raising, what do I hope for? In general terms I’d wish for some of the promising research that is out there to become a reality. I’d hope for a better quality of life for people living with Parkinson’s across the world, and that’s what drives us.

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Parkinson's Awareness Month Parkinson disease research Patients

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Exploring the future of dermatology at AAD 2023

Vanco Vlastimil (��ֳ� S.A.) — Fri, 17 Mar 2023 11:22:35 +0000

Exploring the future of dermatology at AAD 2023

Eimear O'Brien, Global Communications & Company Reputation

Vanco Vlastimi… Fri 17/03/2023 - 12:22

The American Academy of Dermatology (AAD) Annual Meeting takes place this week in New Orleans, Louisiana, U.S., 17-21 March. We spoke with Braulio Gomez, U.S. Medical, ��ֳ� and Owen Davies, Global Medical, ��ֳ� to find out more.

What can you tell us about AAD 2023?
Braulio Gomez: AAD 2023 is among the largest and most significant yearly meetings in the field of dermatology. Each year, this meeting brings together the community for a comprehensive learning experience, offering scientific sessions that comprise symposia, forums and interactive workshops. Hosted in New Orleans this year, it is anticipated that the meeting will attract thousands of medical professionals from all over the world. The event provides an opportunity for distinguished experts, clinicians, and scientists to share their expertise, best practices, and insights in the field of dermatology. As a long-standing participant of AAD, ��ֳ� is committed to advancing research in and to providing solutions that meet the needs of patients across a range of dermatological conditions. We look forward to connecting with the community this week to share and discuss the latest research, collaborate with peers, and explore the future of dermatology.

Can you share more about ��ֳ�’s commitment in the area of dermatology?
Owen Davies: ��ֳ� is committed to improving the lives of individuals affected by immune-mediated inflammatory diseases, and we are passionate about creating a world where these diseases no longer impose a burden on patients. We believe that collaborating closely with the community is crucial to achieving this goal, as it leads to a deeper understanding of patients’ needs, advances in clinical knowledge and scientific understanding. Our Patient Value Strategy places the patient and their experiences at the forefront of everything we do. Through our dermatology partnerships we are able to build strong connections with both the patient and scientific communities. This close collaboration enables us to gain a deep scientific understanding of dermatological conditions and helps us to enhance standards of care and demonstrate our dedication to improving patient outcomes.

Can you tell us about ��ֳ�’s scientific presence at AAD 2023?
Owen Davies: This year, we are excited to share our latest research in moderate to severe plaque psoriasis, active psoriatic arthritis, and moderate to severe hidradenitis suppurativa. We are thrilled to be presenting eight abstracts, which have been accepted as seven posters and one oral platform presentation. These abstracts represent the culmination of our commitment to advancing dermatology research and improving the standard of care for individuals affected by these conditions.

What can healthcare professionals expect to experience at the medical section of ��ֳ�’s booth?
Braulio Gomez: At the medical section of the booth, delegates can look forward to an interactive and immersive experience with the opportunity to learn more about hidradenitis suppurativa, psoriatic arthritis and psoriasis. If you are a healthcare professional attending AAD 2023, we look forward to welcoming you to our booth, where you will have the opportunity to meet members of our ��ֳ� team, discuss the latest research, and explore further innovative approaches to help address patients’ needs.

What are your hopes for the future of dermatology?
Braulio Gomez and Owen Davies: Scientific understanding of many inflammatory dermatological diseases is advancing at an incredible rate – but there’s still much to be done to help people living with these debilitating diseases live to the fullest. At ��ֳ�, we share a vision of a future where innovative science and technology drive progress in disease management. With increased understanding of conditions such as hidradenitis suppurativa, psoriasis, and psoriatic arthritis, we believe that pioneering new approaches to disease management will emerge, providing hope for patients and healthcare providers alike.
Collaboration is also key to growing our collective, scientific understanding of dermatological conditions and we always look for ways to work closely with the most passionate partners as we strive to improve every stage of the patient journey. We look forward to continuing our close collaborations with all stakeholders and we believe that our shared commitment to advancing dermatology research will result in a brighter future for patients and healthcare providers.

Stay up to date with ��ֳ� news from the 2023 AAD Annual Meeting by following us on our social media channels, including Twitter and LinkedIn.

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AAD 2023 dermatology research Hidradenitis Suppurativa psoriasis psoriatic arthritis

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Patient involvement in early Parkinson’s research

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New approaches in epilepsy research

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Our hope for Parkinson’s research

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Exploring the future of dermatology at AAD 2023

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