UCB has been rapidly investing in our digital business transformation to unleash the power of digital innovation to help achieve better outcomes for patients, faster. We’re doing this across therapeutic areas because we believe technology solutions, in addition to our medicines, can help support and benefit people living with severe diseases. By partnering with like-minded companies and building our own data capabilities, we can achieve an even greater impact for patients by improving diagnosis, treatment, and quality of life.

Leading in Psoriasis and Skin Disease

Psoriasis, a common autoimmune disorder affecting more than eight million Americans, is just one disease where we’re using digital tools to one day help detect and treat the disease earlier.¹  

As part of the Psorcast Digital Biomarker Consortium, we have partnered pre-competitively to develop and validate meaningful digital measures, like plaque coverage, nail psoriasis, joint tenderness and enthesitis² allowing patients to monitor their skin and joints in-between clinical visits through a smartphone. Patients in the Psorcast study can use the app to track their symptoms over time and monitor fluctuations in disease activity, enabling them to more easily present psoriatic disease episodes and flares to their physicians. The app collects anonymized data and lifestyle factors from Apples’ Healthkit ecosystem such as diet, sleep and physical activity, with the goal of opening-up new possibilities for patient-driven remote clinical care where patients can track their symptoms for fluctuations in disease activity and modulate the frequency of appointments, directly impacting the healthcare services. The ultimate vision of the study is to integrate these digital measurements into a tool that creates personalized forecasts of disease activity, allowing for timely disease intervention in daily clinical practice as well as prediction of therapeutic response, flare/remission cycle and early detection of transition from psoriasis to psoriatic arthritis. With digital tools like the Psorcast app, we aim to offer a more holistic management of the disease with a positive impact for people living with psoriatic disease, now and into the future.

Beyond psoriasis, we’re pleased to be a founding project partner with the Digital Medical Society (DiMe) and other innovative companies seeking to have a deeper understanding of our skin through a pre-competitive project related to digital endpoints for atopic dermatitis related to nocturnal scratch. 

Partnering in Epilepsy 

Epilepsy is a chronic neurological disorder of the brain characterized as one or more unprovoked seizures with a risk of further seizures.³ Because of the unpredictable nature of epilepsy, technology solutions that can predict when a seizure may occur could change the sense of control and quality of life for patients and caregivers living with epilepsy. 

Currently, there is not a clinical-grade seizure prediction tool, which measures brain activity and other vital signs in a non-invasive, easy-to-wear design. Because of this, sufficiently reliable, longitudinal data of individuals’ seizure times are not available. 

UCB has joined together with partners Byteflies, EPILOG, Eysz, Neurava Inc., Neuroventis, NextSense, Inc, and Nile in the first, collaborative Seizure Forecasting Roundtable to develop a better understanding of reimbursement policies and secondly, to map out and detail the roadmap to one day make an accurate seizure prediction/forecasting solution a reality.

In order to do this, we must have access to a large, comprehensive, and continuous recording data set with multimodal bio signals analyzed with a multidisciplinary approach. We further need to identify individual patterns over a longer time, as there most likely won’t be a “one solution fits all tool.”

Building Capability in Rare Disease

As UCB continues to advance our ambition to find solutions for people living with rare diseases, data and technology are critical because of the misdiagnosis, underdiagnosis, and undertreatment that people living with a rare disease often face. Of the approximately 6,000 rare diseases identified, 95 percent still have no treatment option.⁴ 

Specifically in myasthenia gravis, a debilitating, chronic and fluctuating autoimmune neuromuscular disease where the body’s immune system mistakenly targets the connections between nerves and muscles, we are using digital solutions to help identify patients. This can be challenging since a rare disease, like MG, affects less than 2 people per 2,000.⁵ In addition to identifying those patients, we’re also using technology to create personalized pathways since a single therapy may not work for everyone. 

Over the past few years, we’ve been building a digital backbone to harness data related to rare disease populations in a meaningful, tangible, and real-world way to continue to have proximity to patients, to understand the differences, and to continue to adjust our approach to care.

As we continue to invest in our data capabilities and to partner for a greater impact, we keep patients at the heart of everything we do in order to help them live healthier lives with solutions that complement medicines. UCB’s legacy of a patient-centered approach, combined with our scientific and clinical expertise, positions us to transform the way care is delivered and unlock more tailored solutions that can make a meaningful impact on the lives of people living with severe diseases.

References:

1. Rachakonda TD, Schupp CW, Armstrong AW. Psoriasis prevalence among adults in the United States. J Am Acad Dermatol. 2014;70(3):512-516
2. Webster DE, Haberman RH, et al. Clinical validation of digital biomarkers and machine learning models for remote measurement of psoriasis and psoriatic arthritis | medRxiv https://doi.org/10.1101/2022.04.13.22273676.
3. The Epilepsy Foundation of America. What is epilepsy? http://www.epilepsy.com/learn/epilepsy-101/what-epilepsy. Accessed 30 June 2022.
4. PhRMA. Spurring Innovation in Rare Disease. 2017. https://onphr.ma/3Hy2IGw. Accessed September 2022.
5. Myasthenia Gravis Foundation of America. Myasthenia gravis infographic. https://myasthenia.org/Portals/0/MG%20 Infographic%20Final.pdf (Last accessed: November 2021)