Article
Introducing the ESPN Pediatric Craniectomy and Cranioplasty Registry (PedCCR)
Vorstellung des ESPN Pediatric Craniectomy and Cranioplasty Registry (PedCCR)
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Authors
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Thomas Beez
- Universitätsklinikum Düsseldorf, Klinik für Neurochirurgie, Düsseldorf, Deutschland
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Martin Ulrich Schuhmann
- Universitätsklinikum Tübingen, Sektion Pädiatrische Neurochirurgie, Klinik für Neurochirurgie, Tübingen, Deutschland
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Federico Di Rocco
- Hôpital Femme Mère Enfant, Service de Neurochirurgie Pédiatrique, Lyon, Frankreich
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Paolo Frassanito
- Fondazione Policlinico Universitario A. Gemelli, Pediatric Neurosurgery, Rome, Italien
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Ulrich-Wilhelm Thomale
- Charité – Universitätsmedizin Berlin, Selbständiger Arbeitsbereich Pädiatrische Neurochirurgie der Klinik für Neurochirurgie, Berlin, Deutschland
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Hans-Christoph Bock
- Universitätsmedizin Göttingen, Neurochirurgische Klinik, Göttingen, Deutschland
| Published: | May 25, 2022 |
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Outline
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Objective: In the pediatric age group the evidence regarding decompressive craniectomy (DC) is weak. Literature on pediatric cranioplasty is even more limited. Concerns are resorption of autologous bone flaps, skin breakdown and growth-related problems associated with synthetic implants. The relevance of DC and subsequent cranioplasty and the need for accurate and systematic data have led to the creation of the Pediatric Craniectomy & Cranioplasty Registry (PedCCR) under the auspices of ESPN.
Methods: After thorough literature review, gaps in knowledge and evidence were identified and the following aims for PedCCR were defined: 1) Compare surgical practices regarding indication, timing and operative technique in a large multicenter cohort. 2) Provide outcome data in a large multicenter cohort. 3) Establish risk factors for complications and cranioplasty failure based on systematic data reaching back as far as the initial injury.
Results: The PedCCR is a prospective, multicenter, open registry enrolling children (≤16 years) undergoing DC and/or cranioplasty for any pathology. A steering committee will assure good scientific practice. Standardized questionnaires were designed and data will be collected online in an electronic joint database, which is currently in the testing phase. The core set of data comprises case report forms for DC, cranioplasty and follow-up visits for at least 24 months, with follow-up forms being recommended until adulthood. Incident reporting forms can be submitted for any incident or unscheduled operation. All forms allow reporting of basic data even in the absence of the patient, i.e. by telephone interview or written contact to parents/carers/treating physicians/rehabilitation clinic.
Conclusion: The PedCCR sets out to answer highly relevant open questions regarding pediatric DC and cranioplasty by using a high-quality prospective approach. The registry proposal was designed to maximize scientific yield at reasonable effort for participating centers. Collaboration is highly appreciated to advance this project together, which is due to start enrolling patients in early 2022.
