�ʲ��쾱�Բ��ǲ�’s

Reflections on winning the Made with Patients Award: our journey in Parkinson's disease

Vandenbruaene Nathalie — Wed, 29 May 2024 11:27:45 +0000

Reflections on winning the Made with Patients Award: our journey in Parkinson's disease

Kate Trenam, Patient Engagement - Early Research

Vandenbruaene … Wed 29/05/2024 - 13:27

With immense pride and humility, ��ֳ�’s Patient Engagement Council for �ʲ��쾱�Բ��ǲ�’s Research (PECPR) initiative has been selected as a winner of the second edition of the Made with Patients Awards. “Made with Patients” is the first global award celebrating innovators in patient engagement. Hosted by Patient Engagement for Medicine Development (PFMD), the award recognizes outstanding contributions across medicine development, MedTech, digital health sectors, and more. It recognizes over two years of dedicated work in �ʲ��쾱�Բ��ǲ�’s by ��ֳ� and our partners, �ʲ��쾱�Բ��ǲ�’s Foundation and �ʲ��쾱�Բ��ǲ�’s UK.

For ��ֳ�, this also serves as a moment to reflect on our ongoing mission to transform care for those living with �ʲ��쾱�Բ��ǲ�’s.

The Challenges for Patients
The journey for patients with �ʲ��쾱�Բ��ǲ�’s is fraught with challenges, beginning with the often prolonged and complex diagnostic process. The odyssey from first symptoms to diagnosis can be a harrowing experience for patients and their families, marked by uncertainty and frustration.

Once a diagnosis is made, the road doesn’t get much easier. Current treatments primarily focus on managing symptoms1 without truly altering the disease's relentless progression. While these treatments provide necessary relief, they represent a compromise, not a victory, in the battle against �ʲ��쾱�Բ��ǲ�’s.

“The experience with the PECPR demonstrates that patients can make an impactful contribution to prioritization, planning, and programming of research. The Council created an open and constructive atmosphere attributing equal weight to the views of everyone participating. PECPR being awarded the Made with Patients award further encourages industry and patient organizations to see us for who we are,” said Marc van Grieken, �ʲ��쾱�Բ��ǲ�’s patient advocate.

The Path Less Trodden
At ��ֳ�, we have dared to challenge the status quo, driven by a belief that patients deserve more than symptomatic relief. This paradigm shift demands innovation, courage, and an unwavering commitment to scientific excellence. Our vision extends beyond the current landscape of treatment, aiming to pioneer therapies that can slow down or even halt the progression of these debilitating conditions.

The Importance of Partnership
Central to our approach is the principle of partnership, particularly the involvement of patients at every stage of drug development. This collaborative ethos is reflected in our alliances with industry leaders and research institutions, which amplify our capabilities and accelerate our progress towards transformative treatments.

Our partnership philosophy extends to include the most critical stakeholders of all—the patients themselves. From the early stages of research through to clinical trials and beyond, we integrate the patient voice into every facet of our work. We aim to work as true trusted partners with patients. This patient-centric approach not only enriches our understanding but ensures that our innovations truly meet the needs of those we serve.

“It is critical to the �ʲ��쾱�Բ��ǲ�’s Foundation to engage people with �ʲ��쾱�Բ��ǲ�’s as partners in everything we do. We are proud to be part of this council which puts the voice of people living with the disease at the forefront,” said John Lehr, President and Chief Executive Officer, �ʲ��쾱�Բ��ǲ�’s Foundation.

“Parkinson's UK is immensely proud of its longstanding partnership with ��ֳ�, Parkinson's Foundation, and the Parkinson's patient community. Our collaboration via the PECPR, showcases how industry, patient organisations and the patient community can work together towards positively impacting research for the benefit of the Parkinson's community,” said Nikul Bakshi, Research Involvement Manager, �ʲ��쾱�Բ��ǲ�’s UK.

Looking Forward
The path to a new treatment paradigm is long and fraught with challenges, but the Made with Patients Award serves as a beacon of encouragement, illuminating our way forward. It is a testament to the dedication of our teams and more importantly, the patients who have been involved in PECPR, including those who are no longer with us. This award serves as a reminder of the lives we strive to improve, and a spur to continue our pursuit of excellence.

solutions

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Differentiating symptoms of �ʲ��쾱�Բ��ǲ�’s and PSP: Is wearable technology the answer?

eCMSadmin — Fri, 24 Jul 2020 13:00:00 +0000

Differentiating symptoms of �ʲ��쾱�Բ��ǲ�’s and PSP: Is wearable technology the answer?

Tim Buchanan, Patient Value Neurology & Europe/International Solutions

eCMSadmin Fri 24/07/2020 - 15:00

One of the problems in trying to correctly diagnose and treat movement disorders such as �ʲ��쾱�Բ��ǲ�’s Disease (PD) and Progressive Supranuclear Palsy (PSP), as well as conduct clinical trials of new treatments, is that at present there is a lack of sensitive, objective and quantitative diagnostic measures of relevant functional ability.

Objective numerical measures of disease are needed for accurate diagnosis and staging of disease, monitoring of progression rate, stratification of patients for entry into clinical trials and detection of an early signal to guide critical go/no go decisions.

With the aim of addressing these challenges in 2016 ��ֳ� provided a grant to Oxford University for a highly innovative and pioneering project known as the Oxford QUantification In Parkinsonism (OxQUIP) study. The main objective of the study, led by Professor Chrystalina Antoniades, was to develop ways of accurately measuring neurological disorders such as PD and PSP, two progressive neurodegenerative brain disorders affecting movement and cognition.

This study was designed to precisely measure subtle abnormalities in the timing, speed and coordination of a range of movements in people with PD and PSP at various stages of progression over a three-year period, along with an age- and sex-matched healthy control group.

Within this study participants perform a range of tasks while wearing sensors that accurately quantify their performance. Measurements recorded included eye movements with infra-red cameras and body movements using accelerometers and cognitive function using a tablet. Participants also perform cognitive tasks on a tablet computer, testing for example their ability to deduce the rules governing the movement of shapes on the screen.

Early data from the OxQUIP study suggest wearable technology, combined with artificial intelligence and machine learning, could offer the potential to accurately distinguish symptoms of PD from PSP.

The research published in the journal Gait and Posture identified 17 features which allowed researchers to discriminate PSP with a high degree of sensitivity and specificity (86% and 90% respectively) using an array of six motion sensors.

The study also suggests that optimal separation between the two patient populations is achieved via application of motion sensors to three distinct body sites, however, a single lumbar motion sensor could deliver comparable classification, offsetting a modest loss of accuracy with increased convenience and simplicity.

“Although in the early stages the symptoms of PSP and PD can appear quite similar, from a modality perspective the two conditions have different underlying pathophysiology”, explained ��ֳ�’s Tim Buchanan, co-author of the paper and the clinical development lead on the anti-tau programme at ��ֳ�. “Being able to accurately differentiate the two diseases by harnessing wearable technology, combined with machine learning, could support movement disorder specialists in earlier diagnosis and tailored management approaches, avoiding misdiagnosis and supporting better and more targeted treatment strategies.

To maximise the benefit from any potentially disease-modifying treatment for PSP an early and accurate diagnosis will be required so that treatment may be initiated as early as possible in the course of the disease. To this end and based on the exciting initial findings from the OxQUIP study, ��ֳ� has extended its funding for an additional two years.

“We are delighted to continue our collaboration with ��ֳ� on the OxQUIP study which has the potential to be a game-changer when it comes to the early diagnosis of PSP” explained Professor Chrystalina Antoniades, lead study investigator for the programme.

The aim of the next phase of the collaboration is to increase the number of PSP patients as well as extend the acquisition of quantitative data to the real-world setting of the patient’s home. It is anticipated that this research will lead to further publications aimed to support the movement disorder community in improving the diagnosis and management of people living with this debilitating condition.

Learn more about PSP here.

innovation

Progressive Supranuclear Palsy wearable technology PSP PD �ʲ��쾱�Բ��ǲ�’s disease �ʲ��쾱�Բ��ǲ�’s OxQUIP Oxford University machine learning

Comment:

Posted by Sandra Campbell, 18 August 2020

Wonderful developments supporting earlier diagnosis of PSP. Wishing the team continued success .

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Reflections on winning the Made with Patients Award: our journey in Parkinson's disease

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Differentiating symptoms of �ʲ��쾱�Բ��ǲ�’s and PSP: Is wearable technology the answer?

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�ʲ����쾱�Բ��ǲ�’s

Reflections on winning the Made with Patients Award: our journey in Parkinson's disease

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Differentiating symptoms of �ʲ����쾱�Բ��ǲ�’s and PSP: Is wearable technology the answer?

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Differentiating symptoms of �ʲ��쾱�Բ��ǲ�’s and PSP: Is wearable technology the answer?