Muscular Dystrophy News covered GDPR and rare disease registries after ECRD 2018, citing Marius Parescius, CEO of Lithuania’s International Security Cluster, in the context of patient data misuse and extortion risks.
The ECRD 2018 programme also listed Marius Parescius as a panellist in the “The real life of data” discussion, connecting cyber security with digital health, registries and patient trust.
Lessons for health data projects
- Patient registries need both legal compliance and operational security.
- Access control must be paired with monitoring and accountability.
- Social engineering remains a practical risk in medical organisations.
- Trust is part of the infrastructure: people share data only when protection is credible.
Source: Muscular Dystrophy News, 2018-05-24; ECRD 2018 programme