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The investigators will assess the use of a smart phone app to monitor patient reported outcomes and record biometric data in patients with myeloproliferative neoplasms.
To determine whether the development of a dedicated myeloproliferative neoplasm (MPN) smartphone application is of benefit to MPN patients and shows utility for medical professionals to explore efficient disease management through retrieval of 'real-world' patient data.
A 5-year sub-study using wearables is also planned to explore symptom management and collect biometric data to assess how this correlates with symptom burden, disease specific outcomes, treatment response and quality of life. The app's data collection capabilities have the potential to revolutionize the research landscape for MPNs. By collecting large volume data from this patient group, researchers will be able to assess trends in treatment response, biomarker identification and allow optimisation of therapeutic pathways and improve design of clinical trials. This could lead to the development of new treatments being made more widely available to patients and potentially improve the lives of this patient population.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| MPN patients | U.K. based adult patients with MPN diagnosis. |
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| Measure | Description | Time Frame |
|---|---|---|
| Patient reported outcomes - Myeloproliferative Neoplasm-10 Total Symptom Score | The primary outcome of this study will be to characterise a baseline of healthcare data, patient reporting of symptom burden (as per MPN 10 symptom assessment form, raneg 0-100, higher scores indicative of greater symptom burden) to understand its relevance for disease-specific clinical outcomes. | 5 years |
| Measure | Description | Time Frame |
|---|---|---|
| Healthcare adherence | To determine the association between patients' adherence to medication, number of hospital attendances and admissions, and data from the wearables. | 5 years |
| Biometric data analysis - activity index |
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Inclusion Criteria:
Exclusion Criteria:
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U.K. based adult patients with diagnosis of MPN.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Patrick Harrington, MBBS PhD | Contact | +447946509718 | patrick.harrington@gstt.nhs.uk | |
| Amna Sheikh | Contact | amna.sheikh@gstt.nhs.uk |
| Name | Affiliation | Role |
|---|---|---|
| Patrick Harrington, MBBS PhD | Guy's and St Thomas' NHS Foundation Trust | Principal Investigator |
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No current plans to share patient data with other researchers.
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| ID | Term |
|---|---|
| D009196 | Myeloproliferative Disorders |
| ID | Term |
|---|---|
| D001855 | Bone Marrow Diseases |
| D006402 | Hematologic Diseases |
| D006425 | Hemic and Lymphatic Diseases |
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Wearable device tracking activity index (calories)
| 5 years |
| Biometric data analysis - sleep score | Wearable device tracking sleep score (0-100) | 5 years |
| Biometric data analysis - heart rate | Wearable device tracking heart rate | 5 years |