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The Synostosis Research Group (SynRG) Outcomes Study: Preliminary Results From A Multi-center, Prospective Consortium For The Study Of Craniosynostosis Diagnosis And Treatment
Lucas A. Dvoracek, MD1, John RW Kestle, MD2, Amy Lee, MD3, Richard CE Anderson, MD4, Barbu Gociman, MD2, Kamlesh B. Patel, MD5, Matthew D. Smyth, MD5, Craig Birgfeld, MD3, Ian F. Pollack, MD1, Mandeep Tamber, MD6, Thomas Imahiyerobo, MD4, Faizi A. Siddiqi, MD2, Jesse A. Goldstein, MD1.
1University of Pittsburgh, Pittsburgh, PA, USA, 2University of Utah, Salt Lake City, UT, USA, 3University of Washington, Seattle, WA, USA, 4Columbia University, New York, NY, USA, 5Washington University in St. Louis, St. Louis, MO, USA, 6University of British Columbia, Vancouver, BC, Canada.

PURPOSE: Craniosynostosis (CS) treatment is complex and varies widely. Large-scale outcome studies are difficult given the practice variation, low incidence of disease, and long time between intervention and final outcome. Established in 2016, the Synostosis Research Group (SynRG) is the largest multi-center consortium focused on prospectively evaluating the diagnosis and management of patients with CS. Here we present a preliminary analysis of these data.
METHODS: Institutional review board at each SynRG institution approved this study prior to data collection. Patients diagnosed with CS who presented to any of 5 institutions from 2017 to present were enrolled in this study. Clinical data in 276 categories including history, diagnosis, radiographic imaging, intra-operative details, hospital course, and follow-up were recorded prospectively and stored in a REDCap database.
RESULTS: Of 298 patients registered, 62.7% were male. Average age at registration was 10.4 months. Single suture CS accounted for 80% of patients and multisutural 20%; 3% of patients were syndromic. Mean age at surgery was 11.3 months. 46% underwent open vault reconstruction, 43% underwent strip craniectomy, and 11% underwent other types of reconstructions. Of those who underwent open reconstructions, 50.1% were fronto-orbital advancements. Of those who underwent strip craniectomy, 66.2% were sagittal, 16.9% metopic, and 13.6% coronal. Drains were used in 40% of patients. Antibiotics were given before incision in 98% of patients and continued post-op in 25% for a mean of 25 hours post-op. Tranexamic acid was used in 46% of patients and steroids in 60.5%. Intraoperative transfusion occurred in 42% of patients (80% in vault reconstructions and 11% in strip craniectomies). Postoperative hematocrit was on average 27.0, and 4.6% of patients required post-op transfusion. In-hospital complications were hematoma in 2.3%, early wound breakdown in 0.5%, seizure in 0.5%. No CSF leaks, infections, or deaths were reported. Early reoperations were necessary in 1.9% of patients. Mean length of stay was 2.7 days. Narcotics were prescribed at discharge for 73% of patients.
CONCLUSION: Large, prospective, multicenter studies of CS treatment have the potential to identify opportunities to optimize care and improve outcomes. This preliminary analysis of the SynRG data reveals clear trends in treatment of CS and will be useful in improving outcomes moving forward as the consortium continues.


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