PRiSMA—Pediatric Registry for Stroke as a Multidisciplinary Approach to Healthcare Research

Background/Purpose: The therapeutic approach for pediatric stroke—a rare and often multifactorial disease—is experience-based and frequently relies on local expert opinions and retrospectively collected data. Prospective clinical studies, especially with focus on the acute phase, are often not feasible in pediatric arterial ischemic stroke. A well-founded scientific analysis with systematic collection of patient data in the acute and long-term course is currently lacking in Germany. This would serve as the basis for optimized diagnostics, personalized acute therapy, recurrence prevention, and neurorehabilitation.

Methods: The project PRiSMA now offers a Germany-wide pediatric stroke registry as the necessary interdisciplinary platform for targeted pediatric stroke care and research.

Results: All children and adolescents (>28 days to 18 years) with arterial ischemic or hemorrhagic stroke can be included. The multicenter, prospective, and longitudinal data collection will cover various aspects, including clinical presentation, risk factors/etiology, diagnostics, acute therapy, secondary prophylaxis, neurological and neuro-psychological course, outcome, and quality of life. Data will be collected during the acute phase, at 3 to 6 and 12 months, and then annually in the long-term follow-up, as well as in case of possible stroke recurrences. As part of an international collaboration, PRiSMA will also involve patients from Austria and the Netherlands, with plans to include other EU countries.

Conclusion: PRiSMA also aims to create a research network to consolidate expertise on this rare disease and to enable future research projects through a multidisciplinary approach. PRiSMA provides the digital infrastructure for both national and international collaborations. A first satellite study is already in preparation: “PRiSMA German Gene” uses trio-exome sequencing to identify genetic predispositions in pediatric stroke patients.

Publikationsverlauf

Artikel online veröffentlicht:
13. November 2023