Independence
Non-profit. No data interests. Governance by the medical community, not by the operator.
Together for better care in complex diseases.
One4 Health connects data directly from patients, researchers and industry in an independent, non-profit digital ecosystem.
COMMUNITY
From the community, for the community — non-profit and free of charge
One4 Health brings together what has so far run side by side in the care of complex diseases: the work of treatment centers, the experiences of patients and research into new therapies. On one shared, encrypted platform — so that care, registries and studies interlock instead of remaining isolated.
We are non-profit — founded on behalf of the medical expert community by the German Society for Neuropediatrics (GNP) and the National Gene and Cell Therapy Registry Germany (n-GCT-R). Participation is free of charge for patients and treatment centers. Access to data is decided by the expert community itself, following transparent rules — not by the operator. Data use therefore follows the progress of science, not any commercial interest.
One4 is an ecosystem in development. Treatment centers and patients help shape from the outset which functions are created and how it grows.
DEMOCRATIZING HEALTH DATA
Vision & mission
Every innovative therapy is accompanied independently, digitally and transparently from approval through long-term evaluation.
Data sovereignty — federated data storage
Data belongs to those who generate it. Every center retains full control.
Transparency
Blockchain-based proof of data handling. Open governance through boards and charter.
Collaboration
Centers, patients, research and industry work in one shared ecosystem. Synergies instead of silos.
Governance —
Who decides about data?
The One4 principle applies in every project: those who generate data decide who may work with it. The operating company does not decide on data use.
Data access is reviewed by curator boards and use-and-access committees. Every decision is transparent, documented and bound to a charter.
Technically, this is based on decentralized, federated data storage and context-specific release — by patients as well as by treating physicians.
Every registry and study is governed by an independent board composed of medical experts and professional societies.
- sets the scientific and content direction
- steers One4 Health within the project framework
- defines rules transparently in a charter
The board also acts as the use and access committee. One4 Health does not decide who gets access to data.
- formal data-use request through the One4 platform
- review of scientific, ethical and data-protection criteria
- independent decision according to the project charter
The One4 ecosystem
A fully integrated digital ecosystem for care and research.
One4Care
Structured documentation, communication and registry integration in one workflow.
One4 patient app
Digital companion, PROMs, access to findings and secure communication.
Who we support
Four user groups, one shared data and care process.
Clinical connection31 centers
Medical centers
Structured care without loss of control.
One4Care brings history, documentation and care onto one shared platform without patient data leaving the clinical sphere.
- Direct connection to FAIR-DMD
- Documentation along routine care
- Cross-center communication
Patient journeyPROMs in everyday life
Patients and families
Make your experience visible.
The app accompanies the disease journey, bundles findings and makes quality of life visible as part of care.
- Document PROMs directly
- Share findings securely
- Communicate with the clinic
Evidence layerData ecosystem
Life-science partners
Innovative therapies need evidence.
One4 provides controlled evidence from clinical development through long-term post-approval evaluation, efficiently from one data ecosystem.
- Aggregated outcome data
- Scalable
- Transparent data access
Data governanceDecentralized, interoperable, encrypted
Health institutions
An infrastructure for data.
Data governance, data protection and interoperable data structures create a resilient foundation for health research and care steering.
- FAIR data principles
- TI-ready
- Transparent charter processes
Study
FAIR-DMD
A disease-specific digital ecosystem built on the One4 platform for patients with Duchenne and Becker muscular dystrophy in German-speaking countries and their specialized treatment centers.
Data protection
Data protection as architecture
Stored patient data is encrypted throughout - data at rest. Unlike many providers, encryption is not performed by the platform operator but by the users themselves. This creates the highest security level: all platform users hold their cryptographic keys exclusively themselves; the operator cannot technically read stored data, and data use follows a clear UAC process.
View data protection in the ecosystem
End-to-end encryption
Data is encrypted in the clinical or patient environment and remains readable at rest only for authorized key holders. We use the MATRIX protocol and comply with the cryptographic requirements of the BSI technical guideline TR-02102.
Operator exclusion
By design, One4 Health and contractors have no access to patient data. They cannot read, extract or pass it on.
Data sovereignty — federated data storage
Every center has exclusive access to its patient data through the center key. Centers and patients decide granularly which data is shared and on what basis.
Blockchain-based proof
Existence, changes, access and eConsent are documented traceably and transparently without disclosing patient data.