Longitudinal Rare Disease EMR Data in Europe

Longitudinal Rare Disease EMR Data in Europe

Government Control

The organisation and management of the health care system is different in each of the European countries, but they have some strong similarities,

  • Central control:
    • Government Departments of Health control almost the entire delivery of healthcare in Europe.
  • Most European countries are either part of the EU (GDPR)
    • or follow data privacy and security laws that are identical or very similar to those of the EU.

Data Implications

We start with this (somewhat obvious) preamble because these two characteristics of the European health care environment directly affect access to and use of patient-level data.

Patient-level clinical data are generally accessible for research purposes. Whether acquiring data directly from the Government system (as in UK) or indirectly via registries, high quality clinical data are available for research.

But do not try using these same data for anything approaching a non-research purpose – this is strictly forbidden.

The Tudor Health Ecosystem

Tudor Health has a data capture methodology that provides high quality longitudinal clinical data for patients in Europe that may be used for any purpose. Whether it is hospital treatments for oncology, specialists managing patients with rare degenerative disorders, or the mixed-location management of more complex conditions, Tudor Health has the methods necessary to capture commercially usable data.

European Country Clinical Data

For example, a current clinical data capture process is in a rare neurological condition that involves relapses that require

  • emergency treatment;
  • day-to-day care;
  • procedures that come into play as the disease progresses;
  • It also has an initial diagnosis that is frequently confused with a more common condition.

Clinical data have been captured and analysed at a country level in Europe allowing clients to identify country-specific differences in:

  • market dynamics;
  • the progression of new treatments into the disease management cycle;
  • wide-ranging details that could only be found from highly granular, longitudinal clinical data.

About the Author

Simon Fitall

Simon is the CEO of Tudor Health. Specialist in knowledge management with specific interest in longitudinal patient data, data capture and analysis techniques, as well as the assessment and evaluation of IP in pharma and biotech – including all stages of drug development from discovery to death of the product.

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