In this section you will find answers to some of the frequently asked questions about PaLaDIn. If you would like to ask a question that is not listed below, please contact paladin.comms@newcastle.ac.uk.
PaLaDIn (Patient Lifestyle and Disease Data Interactium) is an Innovative Health Initiative (IHI) funded project that will develop and implement an innovative data collection platform to accelerate the development of effective treatments and patient care, enhance healthcare decision-making and improve patient outcomes.
PaLaDIn brings together public and private organisations across Europe, and beyond, to perform collaborative research and development, which is key for the interdisciplinary approach often needed for sustainable innovation. The PaLaDIn consortium consists of 9 partners across 5 countries, including 3 European Member States (The Netherlands, Italy, and Germany), 1 Associated Country (UK), and 1 Third Country (US).
PaLaDIn is committed to enhancing healthcare outcomes for individuals with neuromuscular and other rare diseases through the development of ‘The Interactium®,’ a global, patient-centric data platform. By gathering comprehensive patient data on health status and experiences, we ensure that patients’ voices are integral to healthcare decision-making. Our platform aims to accelerate the development of effective treatments, improve patient-reported outcome measures (PROMs), and inform healthcare decisions. Find out more here.
Data for rare disease patients is scarce, often siloed and the patient voice is missing. Good quality clinical and patient-reported data exists, but it is difficult to combine and link different sources of data. This results in a lack of knowledge about diseases and a delay in diagnosis and medicine development. This means opportunities for healthcare decision-makers, researchers, and drug developers to use this data to develop better care, treatment, and understanding of neuromuscular diseases are lost.
In rare disease research, most of the data currently collected comes from clinical settings, such as hospitals and medical facilities. This type of data often focuses on the medical aspects of the condition, like diagnostic tests and treatments, but it doesn’t always capture the personal experiences of patients. PaLaDIn will try to change this by developing the Interactium® data collection platform which will link together clinical data collected in patient registries with data submitted by patients about how their condition affects their daily lives. By doing this, data from the Interactium that includes data that is important to patients could be used by researchers to develop better treatments and care guidelines. This data could also be used to better inform health care decision making.
PaLaDIn will develop and implement an innovative, secure, accessible, user-friendly and high-quality data collection platform, called the Interactium® to accelerate the development of effective treatments and patient care, enhance healthcare decision-making and improve patient outcomes. The Interactium will link data collected in patient registries with data collected directly from patients. Linking together these different types of data will provide a more comprehensive view and natural history of a patient’s condition and could be used to support health care decision making, using data that’s important to patients and reflects their lived experience.
Types of data the Interactium will collect:
- Patient Reported Outcome Measures (PROMs)
- Patient Reported Experience Measures (PREMs)
- Clinical data (from registries)
- Registries data
- Wearables and medical device data
Patients and caregivers will be able to access the PaLaDIn Interactium via their patient registry to submit data that’s important to them about their condition and lived experience. The platform will be secure, user friendly and will have accessible dashboards that will allow patients to clearly view their data.
In rare disease research, most of the data currently collected comes from clinical settings, such as hospitals and medical facilities. This type of data often focuses on the medical aspects of the condition, like diagnostic tests and treatments, but it doesn’t always capture the personal experiences of patients. PaLaDIn will try to change this by linking together clinical data collected in patient registries with data submitted by patients about how their condition affects their daily lives. By doing this, data from the Interactium that includes data that is important to patients could be used by researchers to develop better treatments and care guidelines. This data could also be used to better inform health care decision making.
Data collected in rare and neuromuscular diseases is scarce, siloed, difficult to access and often does not include patient derived data. PaLaDIn will develop and implement an innovative data collection platform that will provide centralised and structured access to data that can be used to accelerate the development of effective treatments and patient care, enhance healthcare decision-making and improve patient outcomes. PaLaDIn aims to improve the use of patient reported outcomes in regulatory decision by having available for access a pool of valuable and structured patient reported data that is directly linked to clinical data. Regulators and payors will be able to use this data to make more informed decisions about drug approval and reimbursement. In addition, PaLaDIn will create a value-based framework to assess and describe the benefits of using patient reported data, to help normalise this practice in rare conditions which, in many ways, have the greatest need of it.
The Interactium will be an innovative data collection platform designed to link a variety of data sources, including clinical data held in registries, Patient Reported Outcome Measures (PROMs), Patient Reported Experience Measures (PREMs) and data from wearable devices. By creating a comprehensive view of a patient’s condition and experience, the PaLaDIn Interactium aims to place patient-reported data at the centre of healthcare decision-making. Registries will be able to give patients within their registry access to the Interactium patient portal, where they can input data that’s important to them about their lived experience of their condition. Through the PaLaDIn Interactium, registries will be able to contribute to a global pool of PROMs data, fostering a more comprehensive and informed understanding of specific neuromuscular diseases. Such data could be invaluable to researchers, pharmaceutical companies, regulators, and Health Technology Assessment (HTA) bodies, potentially increasing the number of inquiries into patient registries.
Data collected in rare and neuromuscular diseases is scarce, siloed and often difficult to access. The PaLaDIn Interactium will be an innovative data collection platform designed to link together high-quality clinical data collected in patient registries, with Patient Reported Outcome Measures (PROMs), Patient Reported Experience Measures (PREMs) and data from wearable devices in a standardised way. Bringing together this data could provide a more comprehensive natural history of neuromuscular diseases. Data collected in the Interactium could be used to better inform healthcare decision making, including regulatory approvals and market access. Pharmaceutical companies will be able to request access to data that clearly elicits patient preferences and could be used to improve medicine development.
PaLaDIn will integrate more innovative, patient driven solutions to increase recruitment: this will include the Central Recruitment Database (DMD Hub), and Clinical Trial Concierge (FSHD, Project Mercury) approaches. This will not only work to increase numbers of patients recruited into clinical trials but could also increase the diversity of patients involved in research. The data in the Interactium could also support clinical trial feasibility and the design of more innovative clinical trial approaches.
