named programs · 7 · from sources
What they call their work
Better Understanding of the Metamorphosis of Pregnancy (BUMP)
Digital feasibility study tracking women from preconception to postpartum using wearable data to understand health transitions.
Co-developed Digital Health Study for Rare Diseases
Partnership with five rare disease patient organizations to co-design open-source, personalized symptom-tracking apps.
MINDSET Study
Collaboration with the University of Oxford and Bipolar UK to identify real-world digital markers of bipolar disorder including sleep, stress, and social activity.
My Experiences Study
Longitudinal digital health research initiative engaging participants via remote platforms to study personal health patterns.
Stress & Recovery in Frontline Healthcare Workers
Study examining how stress and recovery affect risks for illness among healthcare workers during the COVID-19 pandemic, using passive and active sensing via smartphones and wearables.
Stress in Cardiovascular Disease
Pilot study in partnership with Oxford University Hospitals to track stress and recovery post-myocardial infarction using digital health tools.
Student Stress Study
Development and use of an open-source smart wristwatch to help university students monitor sleep, mood, and stress levels for better mental health.
activities · 3 groups
What they do
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Open Research Infrastructure & Publishing 1 activity
- Sharing research outputs and digital tools with external researchersMakes data, algorithms, apps, research findings, and digital tools openly available to qualified researchers and institutions to advance studies in specific disease areas and support global research collaboration, including algorithm development through challenges and academic partnerships.
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Telehealth and Urgent Care Access 1 activity
- Supporting participant engagement in digital health studiesProvides biweekly phone check-ins for participants in longitudinal studies and offers a Bring Your Own Device (BYOD) option for individuals using personal wearables, enhancing accessibility and retention in research cohorts.
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Uncategorized 2 activities
- Co-designing digital health tools for rare diseasesCo-developed smartphone apps and wearable frameworks for symptom tracking and health data transmission in five rare diseases: Long COVID, pancreatitis, sarcoidosis, primary ciliary dyskinesia, and VCP disease. Produced and released an open-source app co-design manual and made all co-designed apps publicly available to support rare disease research and clinical trial outcome measure development.
- Conducting digital health research using smartphones and wearablesConducts biomedical and longitudinal research using mobile apps, wearable devices, and AI to track symptom trajectories, stress responses, and disease progression in chronic and rare diseases, including Crohn's disease, high-grade gliomas, perimenopause, and Long COVID. Studies include prospective and observational cohort designs with data collection on physiological, behavioral, and psychological metrics.
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financials · form 990 · fy2024
revenue
Total revenue$2.31M
Contributions & grants$1.98M86%
Program service revenue$00%
Investment income$332K14%
Other revenue$0
expenses
Total expenses$1.05M
Program expenses98%
Admin / overhead2%
Fundraising0%
Salaries & benefits$746K
Grants paid out$0
Largest expense lineCompensation
balance sheet
Total assets$1.31M
Cash$1.30M
Investments$0
Liabilities$21K
Net assets$1.29M
Liquid reserves14.9 mo
3 years on record · 2020–2024 · YoY revenue +210.8%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 1
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| Stephen Friend | President | 50 | $111K |
board members · 4
- Christine Lemke — Director
- Eric Schadt — Director
- Nina Coslov — Director
- Tony Ford Hutchinson — Director
relationships · 67
Who they work with
- AgileOps Partner — Collaborated on the co-design and development of smartphone apps for rare disease symptom tracking.
- Arizona State University Partner — Educational affiliation through Diane McKenzie’s doctoral studies in regulatory and clinical research management.
- Bodyport Partner — Collaborating organization in the BUMP study, providing smart scale technology for physiological monitoring.
- Bodyport Partner — Technology and research collaborator in the Stress in Crohn's study.
- CUNY Graduate School of Public Health & Health Policy Partner — Educational affiliation through Christiana Harry’s MPH in Community Health.
- California University of Science and Medicine Partner — Educational affiliation through Jenee Wilson’s Master's in Biomedical Science.
- Cambridge Cognition Partner — Collaborated on the Stress and Recovery study
- Cambridge Cognition Partner — Collaborating organization in the BUMP study, contributing cognitive assessment tools.
- Cambridge Cognition Partner — Technology and research collaborator in the Stress in Crohn's study.
- Center for International Emergency Medical Services Partner — Collaborated on the Stress and Recovery study
- Centre de Recherches Interdisciplinaires Partner — Collaborating on the development of the Open Band using open-source hardware.
- Chan Zuckerberg Initiative Funder — Funded the CZI Rare as One study to co-design digital health apps for rare diseases.
- Chan Zuckerberg Initiative Funder — Funded the Rare As One study to co-design digital health apps for rare diseases.
- Clinicians Partner — International coalition partner in developing research cohorts using digital tools for disease tracking.
- Columbia University Partner — Educational affiliation through Emma Karlin’s MPH in Epidemiology.
- Community Health Center Inc. Partner — Collaborating organization in the BUMP study, supporting participant engagement and health insights.
- Cure VCP Disease Partner — Collaborated on the co-design of digital health apps for Valosin Containing Protein disease.
- Cure VCP Disease Partner — Collaborated on the co-design of digital health apps for rare diseases.
- Duke University Partner — Research affiliation through Alaa Norain’s experience in neuromodulation and technology-driven research approaches.
- Empatica Partner — Collaborates with Empatica to use its technology for quantifying stress levels in chronic diseases.
- Empatica Partner — Technology and research collaborator in the Stress in Crohn's study.
- Evidation Partner — Collaborating on the student stress study.
- Evidation Partner — Collaborating organization in the BUMP study, involved in digital health data collection and engagement.
- Evidation Partner — Collaboration partner in the HERO-CNS study
- Evidation Partner — Technology and research collaborator in the Stress in Crohn's study.
- Evidation Health Partner — Collaborated on the Stress and Recovery study
- Foundation for Sarcoidosis Research Partner — Collaborated on the co-design of digital health apps for rare diseases.
- Foundation for Sarcoidosis Research Partner — Collaborated on the co-design of digital health apps for sarcoidosis.
- Fred Hutch Cancer Center Partner — Professional affiliation through David Lahti’s prior work experience.
- Healthmode Partner — Technology and research collaborator in the Stress in Crohn's study.
+ 37 more
strategies · 5
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Co-Design with Patients to Build Personalized Digital Health Toolsmethodology: patient-centered_co-designBy collaboratively designing digital health tools with patients, we ensure relevance and usability, because involving end-users in development leads to more accurate identification of disease-specific patterns and increases adoption and trust in digital interventions.
- Digital Phenotyping for Personalized Symptom Forecastingmethodology: digital_phenotypingBy continuously collecting passive biometric and behavioral data via smartphones and wearables, we enable early detection and individualized forecasting of health symptoms, because real-time, high-dimensional data reveals patterns invisible to episodic clinical assessments and self-reporting.
- Individual Agency Through User-Controlled Digital Health Toolsmethodology: individual_agency_in_healthBy shifting agency to individuals through access to raw data, open algorithms, and self-monitoring tools, we enable personalized prevention and management of chronic conditions, because user control increases engagement, trust, and behavioral adaptation over time.
- N-of-1 Analysis to Prioritize Personalized Health Trajectoriesmethodology: N-of-1_analysisBy focusing on individual-level (N-of-1) analysis of health data, we generate actionable insights tailored to each person’s physiology and behavior, because population-level aggregates obscure unique patterns critical for managing rare or complex conditions.
- Peer-Powered Research for Collective Health Knowledgemethodology: peer-powered_researchBy enabling individuals to contribute health data and insights within a peer-driven system, we generate shared knowledge for chronic condition management, because collective participation fosters mutual support, increases data diversity, and enhances the relevance and scalability of findings.