The Throm-PED Registry: The Cornerstone of the International Pediatric Thrombosis Network

C.H. van Ommen¹, M. Albisetti², M. Bhatt³, M. Bonduel⁴, M. Bordbar⁵, B. Branchford⁶, E. Chalmers⁷, A. Chan³, S. Holzhauer⁸, J. Jaffray⁹, C. Male¹⁰, P. Monagle¹¹, U. Nowak-Göttl¹², L. Raffini¹³, S. Revel-Vilk¹⁴, N. Sirachainan¹⁵, IPTN Consortium

¹Erasmus MC University Medical Center Rotterdam MC Sophia Children's Hospital, Rotterdam, the Netherlands, ²University Children's Hospital, zurich, Switzerland, ³McMaster Children's Hospital, Hamilton, Canada, ⁴Hospital de Pediatría Prof. Dr. Juan P. Garrahan, Buenos Aires, Argentina, ⁵Shiraz University of Medical Sciences, Shiraz, Iran, Islamic Republic of, ⁶Children's Hospital Colorado, Aurora, United States, ⁷Royal Hospital for Children, Glasgow, United Kingdom, ⁸Charité University Medicine, Berlin, Germany, ⁹Children’s Hospital, Los Angeles, United States, ¹⁰Medical University of Vienna, Vienna, Austria, ¹¹Royal Children's Hospital, Melbourne, Australia, ¹²University Hospital Schleswig-Holstein, Kiel, Germany, ¹³Children's Hospital of Philadelphia, Philadelphia, United States, ¹⁴Shaare Zedek Medical Center, Jerusalem, Israel, ¹⁵Ramathibodi Hospital, Mahidol University, Bangkok, Thailand

Abstract Number: PB1289

Meeting: ISTH 2020 Congress

Theme: Pediatrics » Thrombosis in Neonates and Children

Background: Since the first prospective national registries of pediatric thromboembolic events (TEs) in the nineties, little progress has been made in advancing the knowledge about the management of this potentially life-threatening complication. Due to the relative rarity and heterogeneity of the disease, most management guidelines in children are still based on low evidence studies and mostly extrapolated from adult trials. International research collaboration is needed, which is provided by the International Pediatric Thrombosis Network (IPTN) consisting of pediatric thrombosis centers across the world. The cornerstone of the IPTN is the Throm-PED Registry, a prospective disease-based registry, established to increase knowledge about pediatric TEs in general. This basic registry can flexibly be supplemented with datasheets for additional sub-studies in the future.

Aims: To evaluate the epidemiology, risk factors, and management of arterial and venous pediatric TEs.

Methods: Members of the IPTN register consecutive pediatric patients with venous and arterial TEs in the Throm-PED registry, which is facilitated by the International Society on Thrombosis and Haemostasis (ISTH) installation of REDCap. Following data are prospectively collected in the basic registry: age at diagnosis of TE, gender, type, location, risk factors, and treatment.

Results: Since 2017, 70 centers in 27 countries became IPTN members. Eight centers have obtained Research Ethics Committee approval so far. Hitherto, the Throm-PED registry includes 165 patients with venous TE (male 45%, median age 5.3 years). 31.5% of patients are less than 1 year. Most frequent locations include upper (35.1%) or lower (23.8%) extremity. Most frequent risk factors include central venous catheter (44%), infection (24.4%), and surgery (18.5%).

Treatment	n (%)
Low-molecular-weight heparin	111 (66.1)
Unfractionated heparin	32 (19)
Vitamin K antagonists	34 (20.2)
Direct oral anticoagulants	13 (7.7)
Fondaparinux	11 (6.5)
Bilivarudin	3 (1.8)
Thrombolysis	8 (4.8)
No treatment	15 (8.9)

[Table 1: Treatment of 165 patients with venous VTE]

Conclusions: In a short period, the Throm-PED registry has collected prospective epidemiological data of consecutive pediatric TE patients worldwide. This registry will serve as basis for conducting both epidemiological and cross-sectional, parallel cohort and intervention studies in children with TEs to advance the field of pediatric thrombosis.

To cite this abstract in AMA style:

van Ommen CH, Albisetti M, Bhatt M, Bonduel M, Bordbar M, Branchford B, Chalmers E, Chan A, Holzhauer S, Jaffray J, Male C, Monagle P, Nowak-Göttl U, Raffini L, Revel-Vilk S, Sirachainan N, IPTN Consortium . The Throm-PED Registry: The Cornerstone of the International Pediatric Thrombosis Network [abstract]. Res Pract Thromb Haemost. 2020; 4 (Suppl 1). https://abstracts.isth.org/abstract/the-throm-ped-registry-the-cornerstone-of-the-international-pediatric-thrombosis-network/. Accessed September 29, 2023.

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