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Unlocking Insights: Wearables & Data for Sickle Cell Crisis Prediction

Translating Real-World Wearables and Digital Self-Reporting Data to Novel Research Insights | Vaso-Occlusive Crisis Predictions and Treatment Pathway Insights in Sickle Cell Disease

Studies and resources

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WALDENSTROM MACROGLO-BULINEMIA

MYELOPRO-LIFERATIVE NEOPLASMS

COLD AGGLUTININ DISEASE

CHRONIC MYELOID LEUKAEMIA

ASTHMA

CHRONIC LYMPHOCYTIC LEUKAEMIA

WALDENSTROM’S MACROGLOB-ULINAEMIA (WM)

SICKLE CELL DISEASE

AMYLOIDOSIS

COLD AGGLUTININ DISEASE

Areas of interest /
Real-world experience & unmet needs

Biomarkers /
EQ-5D, Symptoms, Patient-Reported Unmet Need

Published in /
British Journal of Haematology

A Real-World Patient Experiences and Quality of Life Insights Snapshot in Cold Agglutinin Disease (CAD)

British Society For Haematology (BSH) Annual Scientific Meeting (2024)

CHRONIC MYELOID LEUKAEMIA

Areas of interest /
Digital Healthcare Solution Implementation

Target /
Patient Satisfaction, Feedback

Published in /
Journal of Oncology Pharmacy Practice

Evaluation of a smartphone app (My CML) to support patients with Chronic Myeloid Leukaemia: the patient perspective

British Oncology Pharmacy Association (BOPA) Annual Meeting October 2024

SICKLE CELL DISEASE

Areas of interest /
Longitudinal digital outcomes & biometrics tracking

Biomarkers /
Activity, Sleep, Quality of Life

Published in /
HemaSpere

Mapping the Prodromal Stage of Vaso-occlusive Crises: A Patient Experience and Wearable Biometrics-driven Approach

29th European Hematology Association Congress (2024)

SICKLE CELL DISEASE

Areas of interest /
Outcomes research & novel therapeutic impacts

Biomarkers /
PROs, Activity

Published in /
HemaSpere

Monitoring the Real World Impacts of Voxelotor Treatment on Blood Transfusion Requirements, Quality of Life, And Physiological wearable metrics in UK patients with sickle cell disease

29th European Hematology Association Congress (2024) – Publication Only

SICKLE CELL DISEASE

Areas of interest /
Approach to virtual monitoring & their impact

Biomarkers /
Wearables, PROs, Symptoms Scores

Published in /
TBC

A Virtual Hospital Approach in Sickle Cell Disease | Remote Biometric, Quality of Life, and Hospitalisations Monitoring

American Society of Haematology Exposition (2024) — Oral and Posters Presentation

SICKLE CELL DISEASE

Areas of interest /
Real-world patient experience

Biomarkers /
PROs, Activity, Sleep, Heart Rate

Published in /
TBC

Comparison of Sickle Cell Disease Patient Experiences in Developed and Developing Countries: Insights from UK and India Patient Cohorts

American Society of Haematology Exposition (2024) — Oral and Posters Presentation

MYELOPRO-LIFERATIVE NEOPLASMS

Areas of interest /
Longitudinal digital outcomes & biometrics tracking

Biomarkers /
MPN-10 TSS, PROs, Activity, Sleep, Heart Rate

Published in /
TBC

Mympnvoice – a Novel Smartphone App for Monitoring Patient Reported Outcomes and Biometric Data in Patients with Myeloproliferative Neoplasms

American Society of Haematology Exposition (2024) — Oral and Posters Presentation

WALDENSTROM MACROGLO-
BULINEMIA

Areas of interest /
Longitudinal digital outcomes & biometrics tracking

Biomarkers /
EQ-5D, Activity, Sleep, Heart Rate

Published in /
TBC

Feasibility of Advanced Remote Health Monitoring in Waldenstrom Macroglobulinemia: Integrating Wearable Technology and Digital Quality of Life Tracking

American Society of Haematology Exposition (2024) — Oral and Posters Presentation

SICKLE CELL DISEASE

Areas of interest /
AI-driven crisis prediction

Biomarkers /
Wearables, PROs, Pathology

Published in /
TBC

Enhanced Artificial Intelligence (AI)-Driven Prediction of Vaso-Occlusive Crises in Sickle Cell Disease: Precision through Advanced Machine-Learning Frameworks and Digital Remote

American Society of Haematology Exposition (2024) — Oral and Posters Presentation

CHRONIC LYMPHOCYTIC LEUKAEMIA

Areas of interest /
Real-world experiences & unmet needs

Target /
Social Media Keywords

Published in /
TBC

Chronic Lymphocytic Leukaemia Patient Experiences, Challenges: Insights from AI-Driven Social Media Listening Analysis

American Society of Haematology Exposition (2024) — Publication Only

WALDENSTROM MACROGLO-
BULINEMIA

Areas of interest /
Longitudinal digital outcomes & biometrics tracking

Biomarkers /
EQ-5D-5L, Symptoms, Treatments, Wearables

Published in /
Journal of Clinical Oncology

New approaches to active monitoring: Patient-reported outcomes and wearables utilisation in Waldenstrom macroglobulinemia

American Society of Clinical Oncology Annual Meeting (2024)

WALDENSTROM MACROGLO-
BULINEMIA

Areas of interest /
Longitudinal digital outcomes & biometrics tracking

Biomarkers /
PROs, Activity, Sleep, Heart Rate

Published in /

Harnessing Wearable Devices and Patient-Captured Outcomes for Subjective Health Monitoring in Waldenstrom Macroglobulinemia: A Longitudinal Remote Approach is Feasible.

The International Workshop on Waldenstrom’s Macroglobulinemia (IWWM12)

CHRONIC MYELOID LEUKAEMIA

Areas of interest /
Real-world experience & unmet needs

Target /
Treatment, Healthcare utilisation, VOCs, Hb level

Published in /
British Journal of Haematology

Patient experience, treatment adherence and unmet need in UK CML community

British Society For Haematology (BSH) Annual Scientific Meeting (2024)

SICKLE CELL DISEASE

Areas of interest /
Real-world awareness for Novel Therapeutic

Target /
Awareness, Knowledge, Interests, Challenges

Published in /
British Journal of Haematology

Real-World Patient Awareness Around Emerging Gene Therapies: Implications for Barriers to Access

British Society For Haematology (BSH) Annual Scientific Meeting (2024)

SICKLE CELL DISEASE

Areas of interest /
Real-world experiences & unmet needs

Biomarkers /
Prodromal Symptoms, VOCs

Published in /
TBC 

Real-World Vaso-occlusive crisis patient experiences insights: Finding from a sickle cell disease US patient survey and UK workshop

19th Annual Sickle Cell & Thalassaemia Conference (2024)

SICKLE CELL DISEASE

Areas of interest /
Real-world experiences & treatment insights

Biomarkers /
Treatment, Healthcare utilisation, VOCs, Hb level

Published in /
TBC 

Real-World Vaso-occlusive crisis, blood biomarker, transfusion, and treatment cohort Insights: finding from a sickle cell disease (SCD) patient survey in the United States

19th Annual Sickle Cell & Thalassaemia Conference (2024)

SICKLE CELL DISEASE

Areas of interest /
Patient Perspective on Novel Therapeutic

Target /
Awareness, Knowledge, Interests, Challenges

Published in /
TBC 

Exploring patient perspectives on emerging gene therapy: findings from a sickle cell disease (SCD) patient survey in the united Kingdom

19th Annual Sickle Cell & Thalassaemia Conference (2024)

SICKLE CELL DISEASE

Areas of interest /
Longitudinal digital outcomes & biometrics tracking

Biomarkers /
Wearables, PROs, Patient Feedback

Published in /
Indian Journal of Hematology and Blood Transfusion 

Empowering Sickle Cell Disease Management in Indian Tribal Communities: Evaluation of Digital Ecosystem for Enhanced Quality of Life and Healthcare Access

65th Annual Conference of Indian Society of Haematology and Blood Transfusion (Haematocon) (2024)

SICKLE CELL DISEASE

Areas of interest /
AI-driven crisis prediction

Biomarkers /
Sleep, Activity, Heart Rate, Pain, Fatigue, EQ-5D

Published in /
Blood Journal, American Society of Haematology

Predicting Vaso-Occlusive Crises in Sickle Cell Disease through Digital, Longitudinal Tracking of Wearable Metrics and Patient-Reported Outcomes

American Society of Haematology Exposition
(2023) — Oral Presentation

ASTHMA

Areas of interest / National A&E activity & asthma attack prevention

Biomarkers /
Wearables, PROs, Disease Symptoms

Published in /
TBC

Wearable Technology To Support Asthma Patients And Improve NHS Capacity

Collaboration with Modality Partnership
(2023 )

AMYLOIDOSIS

Areas of interest /
Prognostic markers & overall survival

Biomarkers /
Pathology, Activity (6MWT)

Published in /
HemaSphere, European Haematology Association

Disparate Prediction of Outcomes in A Uniformly Treated Cohort of Patients with AL Amyloidosis Stratified by Mayo 2012 & European Cardiac Staging Systems

European Haematology Association
(2023)

WALDENSTROM’S MACROGLOB-ULINAEMIA (WM)

Areas of interest /
Treatment adherence & impact monitoring

Biomarkers /
Activity, Sleep, PROs

Published in /
TBC

A Real-World digital monitoring Study exploring the Day-to-Day Experience of Patient activity, Sleep, and outcome measures in WM

University College London Hospital NHS Trust
(2023 )

SICKLE CELL DISEASE

Areas of interest /
Real-world experiences & unmet needs

Biomarkers /
Social Media Keywords

Published in /
Blood Journal, American Society of Haematology

Understanding the Experiences of Patients with Sickle Cell Disease and Their Caregivers By Social Media Listening in the UK

Collaboration with Pfizer Ltd., American Society of Haematology Exposition
(2023)

SICKLE CELL DISEASE

Areas of interest /
Outcomes research & novel therapeutic impacts

Biomarkers /
EQ-5D-5L, Activity, Sleep

Published in /
Blood Journal, American Society of Haematology

Real-World Outcomes and Digitally Monitored Quality of Life in Voxelotor-Treated Patients with Sickle Cell Disease

Collaboration with Pfizer Ltd., American Society of Haematology Exposition
(2023)

SICKLE CELL DISEASE

Areas of interest /
Outcomes research & novel therapeutic impacts

Biomarkers /
EQ-5D-5L, Side Effects, Disease Symptoms

Published in /
HemaSphere, European Haematology Association

Real-World Outcomes and Digitally Monitored Quality of Life in Crizanlizumab-Treated Patients With Sickle Cell Disease

European Haematology Association
(2023)

SICKLE CELL DISEASE

Areas of interest /
Impact of real-time sleep metrics on QoL

Biomarkers /
EQ-5D-5L, Sleep

Published in /
British Journal of Haematology

Using Wearables and Web-Based Self-Reporting to Explore Deep Sleep and PRO correlations in Sickle Cell Disease

63rd Annual Meeting, British Society of Haematology
(2023)

SICKLE CELL DISEASE

Areas of interest /
Live disease baseline characterisation & tracking

Biomarkers /
EQ-5D-5L, Pain, Sleep, Activity, Heart Rate

Published in /
HemaSphere, European Haematology Association

Real-World PROs and Wearable Metric Correlations: Remote Daily Monitoring for Exploration of Quality of Life in Sickle Cell Disease

17th Annual Sickle Cell and Thalassaemia Conference
(2022)

SICKLE CELL DISEASE

Areas of interest /
Approaches to QoL assessment & their impact

Biomarkers /
EQ-5D-5L

Published in /
HemaSphere, European Haematology Association

Live Outcomes and Biometric Monitoring: Potential Implications For Patient Quality of Life in Sickle Cell Disease

17th Annual Sickle Cell and Thalassaemia Conference
(2022)

SICKLE CELL DISEASE

Areas of interest /
Real-world vaccination impacts

Biomarkers /
Sleep, Heart Rate, Activity, SpO2, ECG, PROs

Published in /
HemaSphere, European Haematology Association

Real-Time Vaccination Impacts in Sickle Cell Disease: A Real-World Patient Case Study for Influenza and Covid-19 Vaccination

Annual Academy of Sickle Cell and Thalassaemia Conference, ASCAT
(2022)