Registers

Registries enriched with patient data

Registries gain value for the patient and professional if the medical data is combined with patient input. It is even stronger when this combination is visualized in easy to read graphs for patients and professionals.

This is a winning concept. 

OSAS_coach

 

Supply data to...

Data are extracted form the database after permission of the patient and can be distributed to third parties..

The data can be collected from various sources.

Patient benefits:

  • Permission & transparancy

Caregiver benefits:

  • Data is enriched with PROMS

Hospital benefits:

  • Control over data exports

  • “The register was operational in three months and 100 participants have already started within six months. A huge number for such a small indication as neurosarcoidosis. Now we want international rollout.”
    - Dr. E. Hoitsma, neurologist Alrijne Ziekenhuis, Leiden

Sponsorship

Registers are funded from different sources, depending on the objective. The nonprofit organization Stichting Infometer ensures proper use of anonymised data. Requests for specific data analysis can be made through Stichting Infometer. info@infometer.nl

Examples

Thiosixregister.nl is a register in which gastroenterologists and IBD patients add data. 

Neurosarcoidose.nl is a register in which doctors and patients add data. The register is now 2 years old and has been awarded a ZONMW grant.

Msstudie.nl is a study in which participants receive feedback, which can be used during the consultation. There are about 400 participants, the follow-up is now five years old and the study will be extended by a five additional years. 

www.pedmyc.nl is a registry in which neonatologists add data (physician-driven).

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