A rare disease registry you control.
Orpha-coded records, consent, and years of follow-up, with anonymised releases to shared European registries when your centre decides.
A rare disease registry records patients with a rare condition over many years, so that a disease seen a few times in one hospital can be studied across many.
In the data hub, your centre keeps each patient's record, coding, consent, and follow-up together, and shares anonymised data when it chooses.
Few patients, followed for many years.
A rare disease centre sees few patients with each condition, so its data counts only when it can be combined with other centres.
- Orpha codes and ICD-10 at capture, for comparison across centres
- Consent recorded with every registration
- Long-term follow-up in the same record
- Imaging and pathology in the patient's record
- Anonymised releases to shared registries, every release logged
How a patient moves through the registry.
- Patient registered
- Coded and consented
- Followed up
- Anonymised release
A national paediatric oncology register runs on this software today.
Questions registry leads ask.
Can we contribute to shared European registries?
Your centre releases anonymised extracts to the registries it chooses, through secure, time-limited links, and every release is logged.
Where does the registry data sit?
Inside your hospital, in the data hub's governed layer. Nothing leaves unless your centre releases it.
Is this example a customer deployment?
No. It shows how a hospital would use capabilities that run today in a national paediatric oncology register on the platform.
Run your registry inside your hospital.
Book a call about the registry your centre runs, and invite your DPO, IT, and quality leads.