Registries & Societies
PeopleWith runs your registry end to end: governance, site activation, patient recruitment, eConsent, continuous patient-reported data and permission-based access for approved researchers. You set the clinical questions. We deliver the registry.
7
live registries in endocrinology
40,000+
active users on the platform
80+
active hospital sites
4
data layers in every patient profile
Why registries stall
Societies and charities know which questions their condition area needs answered. Building and running the registry behind them is a different job.
Systems
Software that has to be built and maintained
Bespoke databases and survey tools take years to build, and someone has to keep them secure, compliant and working.
Governance
Governance rebuilt for every project
Consent, data protection and data-sharing agreements have to be right before the first patient joins, and stay right as the registry grows.
Participation
Patients who drift away
Registries depend on people taking part year after year. Without ongoing support, participation and data quality fall.
What PeopleWith provides
Governance
Governance roadmap
A guided pathway covering UK GDPR, ICO, ethics and consent, reviewed by governance professionals before go-live.
Sites
Site activation
Clinical teams are briefed in plain language and trained remotely, across primary, secondary and tertiary care.
Recruitment
Recruitment & eConsent
Eligible patients are identified and invited, and consent is captured digitally, with every interaction recorded.
Patient app
Continuous patient data
Symptoms, medications, PROMs, PREMs and quality of life captured through the app, between appointments as well as at them.
Retention
Built-in patient support
Patient support keeps participants engaged over time, so your registry keeps its data as it grows.
Access
Dashboards & data access
Near-real-time dashboards for your team, and governed, permission-based access for approved research projects.
Richer data, one profile
Registries and cohorts can link primary, secondary and tertiary care records, then layer what patients report directly on top.
EHR
Electronic Health Records
Primary and secondary care records, integrated across care settings.
ACD
Additional Clinical Data
Disease-specific data beyond standard records, such as genomics and non-codable observations.
PGHD
Patient Generated Health Data
Symptoms, medications, biomarkers, lifestyle and adherence, captured continuously via the app.
PED
Patient Experience Data
PROMs, PREMs and quality-of-life measures layered onto each clinical record.
How a registry launches
Condition agnostic and coded to ICD-10/11 and SNOMED CT, so the same approach works for any condition area.
Step 1
Scope
Agree the registry's purpose, population and core data set with your clinical leads.
Step 2
Govern
Follow the governance roadmap: DPIA, data-sharing agreements, ethics and consent.
Step 3
Recruit
Activate sites, invite eligible patients and capture eConsent.
Step 4
Grow
Capture continuous data, support participants and share it with approved researchers.
Standards & governance
UK GDPR and HIPAA compliant
ICO registered · ZA745747
Coded to ICD-10/11 and SNOMED CT, with FHIR and CDISC/SDTM-ready outputs
Permission-based access with a complete audit trail
Governance-assured statement
“The dataset is available to an approved research team for an approved research project, under a documented legal and governance framework, with appropriate security, access controls, researcher obligations and controls on outputs.”
Questions societies ask
What is a patient registry platform?
A patient registry platform is the system that recruits people with a condition, records their consent, collects their health data over time and makes it available for approved research. PeopleWith provides the platform and runs the delivery, so your society or charity doesn't need to build or maintain its own system.
How do you set up a patient registry in the UK?
Start by agreeing the registry's purpose, population and core data set. Then put the governance in place: a DPIA, data-sharing agreements, ethics approval and a consent model. After that, activate sites, invite eligible patients and capture consent. PeopleWith's governance roadmap guides each of these steps on one platform.
Which conditions can a PeopleWith registry cover?
The platform is condition agnostic and coded to ICD-10/11 and SNOMED CT, so it can support registries in any condition area. We currently run 7 live registries in endocrinology.
What data can a registry collect?
Each participant has one profile combining electronic health records, additional clinical data such as genomics, patient-generated health data captured through the app, and patient experience data such as PROMs, PREMs and quality-of-life measures.
How do you keep patients taking part over time?
The patient app captures data between appointments, and built-in patient support keeps participants engaged, so the registry keeps its data as it grows.
Can a registry link primary, secondary and tertiary care records?
Yes. Registries and cohorts on PeopleWith can link records across primary, secondary and tertiary care, with all data layered to the individual patient.
Who can access registry data?
Data is shared on a permission basis with approved research teams for approved projects, under a documented legal and governance framework, with security, access controls, researcher obligations and controls on outputs.
Start your registry
Tell us about your society or charity and the questions you want answered. We'll show you the platform and how a registry would run.
Get in touch
Discuss your registry →
✓ A walkthrough built around your condition area
✓ A governance pathway for your registry
✓ A plan for recruitment and retention
Sources: Nature (2025), UKRI award rates; Walters et al., BMJ Open (2017), review of 151 NIHR HTA trials; PLOS One (2025), survey of primary care staff. IID3 figures from live PeopleWith delivery. *45% lower recruitment cost benchmarked using SoECAT and AcORD. 298% faster recruitment vs. baseline in IID3.
*Governance-assured statement:
“The dataset is available to an approved research team for an approved research project, under a documented legal and governance framework, with appropriate security, access controls, researcher obligations and controls on outputs.”