My MPN Voice App
Monitor your condition through the
myMPNVoice App
A real-world, observational programme exploring day-to-day wearable metrics, patient-reported outcome measures, and managing quality of life of MPN Patients.
MPN Voice App provides deeper health insights for patients, enhancing Quality of Life management.
Join our research study on Myeloproliferative Neoplasms (MPN). Explore the study details on our website and decide if you’d like to be a part of this transformative journey using technology to enhance the lives of those with MPN. Together, let’s make a difference in understanding and treating this complex condition.
● MPN Voice App
Key
Milestones
Join us on this transformative journey as we harness the potential of technology to enhance the lives of those affected by MPN Together, we can make a difference in the understanding and treatment of this complex condition.
As simple as
Join us on this transformative journey as we harness the potential of technology to enhance the lives of those affected by MPN. Together, we can make a difference in the understanding and treatment of this complex condition.
Arrange to speak to our team to learn more about the Pilot.
Read through the study documents and onboard online if you are interested in taking part.
Once onboarded, you will have access to the app and our team will send you your wearable device.
Research Study FAQ’s
Have you got any further questions? Get in touch with the team at [email protected]
Do I have to take part?
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Your participation in this study is entirely voluntary. You may decide now or later whether or not you wish to take part. You have the right to withdraw from the study at any time without giving a reason. This will not affect your medical treatment or the standard of healthcare you receive.
What about confidentiality?
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All information you provide and any data that is collected over the course of the study will be kept strictly confidential. There will be strong data encryption and protection within a cloud foundation with internet security from Microsoft Azure. This data will be protected under the Data Protection Act and under General Data Protection Regulation (GDPR) rules. You hold the right to withdraw your personal data from the study, even after you have provided informed consent to participate.
Any personally identifiable data will be accessible only by you, your clinician (should you choose to share this information with them), and Sanius Health’s Data Controller. Only the Principal Investigator will have access to patient-identifiable data, for the purposes of building this into the digital data platform and creating anonymised extracts.
Anonymised, non-identifiable data extracts will be available to the research team, led by Dr. Patrick Harrington, and analysed for better insights into MPN. This will be used both for scientific publication in peer-reviewed journals and for a patient-friendly summary of the study findings.
What are the costs?
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It will not cost you anything to take part in this study, and you will not receive any payment for participating in this study.
How will data be extracted from medical records?
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Records will typically be provided by your GP and hospital in paper or electronic, scanned form. These will be put into a digital format through a process called Optical Character Recognition (OCR), which converts these images into text.
Deep learning technology is applied to remove your name from these documents, and the anonymised form is manually transcribed into an analysable format. At enrolment, you will be given a unique, encrypted patient number that protects your identity, but allows data linkage across the different sources.
Are there benefits to taking part?
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No direct benefits in terms of changes to treatment or other aspects of care are involved in this study. The results will add to the current knowledge about MPNs and individual treatment options. It will provide you with a greater understanding of your daily health and medical history, including information you may choose to share with your clinical team to help manage your disease.
Are there any disadvantages to taking part?
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No direct disadvantages in terms of changes to treatment or other aspects of care are involved in this study. The only changes to your day-to-day will be the wearing of your smartwatch, and the time taken to complete the quality of life/patient-reported outcome measures within the platform.
These are designed to minimise time and potential disruption to your routine and can be completed via the Sanius platform, at home or wherever you are.
What happens if I lose my smartwatch?
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If you lose your smartwatch or if it is stolen, Sanius Health is able to remotely shutdown and prevent the device from being used, protecting your data. Please report any loss or theft to the study team immediately. A replacement device may be provided.
What happens at the end of the study?
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If you choose to participate in this study, we will let you know of the results and any implications it may have for your future medical care, as well as any options to continue engagement with this work should you so choose.
You will not be required to return your smartwatch, and may continue to access your data through the Sanius ecosystem should you choose to continue engagement with the organisation after study completion.
Choosing to continue engaging with Sanius will mean that you may continue to sync your wearable device, enter PRO data, and access the historic and any future data you input within the ecosystem.
What happens if my smartwatch picks up an abnormality, e.g., in my heart rhythm?
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This is a purely observational study, and the study team will not be monitoring the output from your smartwatch continuously or in real-time. This may instead happen days or weeks after the data is captured.
The study will not have any direct impact on your care pathways or the escalation protocols of your clinical teams, and we will not be involved in any interventions.
If you notice any changes or your devices detect any potential issues, please follow your usual process of contacting your doctor or clinical team.
What happens to my data once the study ends?
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The retention of personal identifiable data, once the study has ended, will be different depending on whether you choose to keep the wearable device and access to the data platform.
For those who do, data will be kept for as long as you wish to access the Sanius ecosystem.
For those who do not, all identifiable information will be destroyed as per NHS regulations. Anonymised, non-identifiable data will be retained as part of population-level analytics.
Sanius may use de-identified versions of the data to answer future research questions for the disease. While the full scope of what may need to be answered in the future cannot currently be completely foreseen, these will primarily be focused on comparing what the collected data around wearable biomarkers, PROs, and clinical outcomes may look like between different disease subgroups (i.e., age group and sex) or treatment pathways.
What happens to the results of the study?
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The final results are likely to be published within 2 years of the study end, but interim reports of key findings will be released along the way. You will not be identified in any report or publication, and you may request copies of these reports or publications should you wish.
Contact Us
Please feel free to use the buttons below to get in touch with the key contacts on this study.