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International Pediatric Thrombosis Network
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Data Entry • Register for Virtual General Assembly Meeting July 2020

 

The International Pediatric Thrombosis Network is a group of pediatric thrombosis experts whose ultimate goal is to bring the best treatment to children with thrombosis.

Thromboembolic events are increasingly recognized in children. Compared to adults, however, pediatric thromboembolic events are rare and differ significantly in epidemiology: they are heterogeneous with regards to patient age, comorbidity, risk factors, and anatomical location, including all kinds of thrombi such as (neonatal) catheter-related thrombosis and renal vein thrombosis, asparaginase-associated sinovenous thrombosis, and oral contraceptive–associated pulmonary embolism in teenagers.

 

Because of the scarcity of these events, little progress has been made in generating systemic evidence for the management of the disease. Only a few randomized treatment trials have been executed, but most of them closed early due to slow recruitment. Thus, current guidelines for clinical care are based on low evidence and mainly extrapolated from adult studies. Many important questions remain to be answered such as the natural history of pediatric arterial and venous thrombosis, optimal diagnostic modalities, and effective and safe treatment of pediatric thrombosis in special populations, such as neonatal renal vein thrombosis. Because of the rarity and heterogeneity of pediatric thrombosis and the limited number of patients per center, international collaboration is essential to enable high-quality research to improve the evidence for management of thrombosis in children. In addition, collaboration among pediatric thrombosis centers is needed to bundle and expand experience and infrastructure for conducting both industry-sponsored trials and investigator-initiated academic trials.

 

To empower international research collaboration, the International Pediatric Thrombosis Network (IPTN) has been initiated at the International Society of Thrombosis and Haemostasis (ISTH) congress in Berlin in 2017.

 

Mission

The mission of the IPTN is to:

  1. To develop an international registry to conduct epidemiological research, the Throm-PED registry
  2. To develop an international Clinical Trial Network
  3.  To harmonize clinical care via educational tools, lectures and publications.

 

Network Structure

The executive committee of the IPTN has been formed at the SSC on Pediatric/Neonatal Thrombosis and Hemostasis meeting in Berlin 2017. Any center worldwide taking care of neonates and children with thrombosis is eligible to participate in the IPTN. (see below) Every center can have one representative member. Membership requires active participation in group activities. Each member of the IPTN participates in the general Throm-PED Registry of children with thrombosis and is allowed to participate in the sub-studies of the Registry. The IPTN will have at least one annual face to face General Assembly meeting to discuss new and ongoing research projects, (position) papers and education, which will be held in conjunction with ISTH meetings. The first General Assembly meeting was held during ISTH meeting in Melbourne.

 

 

Participation

If your center wants to participate actively in the IPTN, please access the membership form here. After completing the membership formcenters must receive their center numbers prior to completing the survey.

As member, you will be required to enter data of all your thrombosis patients in the Throm-PED Registry. Furthermore, you may participate in the ongoing research projects.

Any member of the Network may propose a research project on a special application form here. These research projects will discussed and voted for during the annual General Assembly meeting or the executive committee meetings of the IPTN. 

 

Research

Throm-PED Registry:

The Throm-PED Registry is the cornerstone of IPTN and provides a survey on the epidemiology and treatment of pediatric thrombosis worldwide.  

Read More

Neonatal Renal Vein Thrombosis Study:

This first research project studies the epidemiology and management of neonatal renal vein thrombosis worldwide as well as the risk factors for recurrent thrombosis and long-term renal sequelae to define patients at risk, which may benefit from antithrombotic therapy.

Read More

 

IPTN Newsletters

IPTN Virtual Annual Meeting 2020

April 2020

April 2019

December 2019

 

Executive Committee

  • M. Albisetti, University Children's Hospital, Zurich, Switzerland
  • M. Bhatt, McMaster Children's Hospital, McMaster University, Hamilton, Ontario, Canada
  • M. Bonduel, Hospital de Pediatría Prof. Dr. Juan P. Garrahan, Buenos Aires, Argentina
  • B. Branchford, Children's Hospital Colorado, Aurora, CO, USA
  • E. Chalmers, Royal Hospital for Children, Glasgow, UK
  • S. Holzhauer, Charité University Medicine, Berlin, Germany
  • C. Male, Medical University of Vienna, Vienna, Austria
  • P. Monagle, Royal Children's Hospital, Parkville, Victoria, Australia
  • U. Nowak-Gottl, University Hospital Schleswig-Holstein, Kiel, Germany
  • C. van Ommen, Sophia Children’s Hospital ErasmusMC, Rotterdam, the Netherlands (Chair)
  • S. Revel-Vilk, Shaare Zedek Medical Center- Affiliated with Hadassah- Hebrew University Medical School, Jerusalem, Israel 

External Advisor: A, Chan, McMaster Children's Hospital, McMaster University, Hamilton, Ontario, Canada

 

Literature

1. Andrew M, David M, Adams M, Ali K, Anderson R, Barnard D, et al. Venous thromboembolic                complications (VTE) in children: first analyses of the Canadian Registry of VTE. Blood.                          1994;83(5):1251-7.

2. Raffini L, Huang YS, Witmer C, Feudtner C. Dramatic increase in venous thromboembolism in              children's hospitals in the United States from 2001 to 2007. Pediatrics. 2009;124(4):1001-8.

3. Revel-Vilk S. The conundrum of neonatal coagulopathy. Hematology Am Soc Hematol Educ                Program. 2012;2012:450-4.

4. Massicotte P, Julian JA, Gent M, Shields K, Marzinotto V, Szechtman B, et al. An open-label                  randomized controlled trial of low molecular weight heparin compared to heparin and coumadin for      the treatment of venous thromboembolic events in children: the REVIVE trial. Thromb Res.                  2003;109(2-3):85-92.

5. Monagle P, Chan AK, Goldenberg NA, Ichord RN, Journeycake JM, Nowak-Gottl U, et al.                      Antithrombotic therapy in neonates and children: Antithrombotic Therapy and Prevention of                  Thrombosis, 9th ed: American College of Chest Physicians Evidence-Based Clinical Practice                Guidelines. Chest. 2012;141(2 Suppl):e737S-e801S.

6. Golomb MR, Fullerton HJ, Nowak-Gottl U, Deveber G, International Pediatric Stroke Study G.              Male predominance in childhood ischemic stroke: findings from the international pediatric stroke          study. Stroke. 2009;40(1):52-7. 

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