AUTHOR=Pelizza Maria Federica , Martinato Matteo , Rosati Anna , Nosadini Margherita , Saracco Paola , Giordano Paola , Luciani Matteo , Ilardi Laura , Lasagni Donatella , Molinari Angelo Claudio , Bagna Rossana , Palmieri Antonella , Ramenghi Luca Antonio , Grassi Massimo , Magarotto Mariella , Magnetti Federica , Francavilla Andrea , Indolfi Giuseppe , Suppiej Agnese , Gentilomo Chiara , Restelli Roberta , Tufano Antonella , Tormene Daniela , Pin Jacopo Norberto , Tona Clarissa , Meneghesso Davide , Rota Lidia , Conti Marta , Russo Giovanna , Lorenzoni Giulia , Gregori Dario , Sartori Stefano , Simioni Paolo , Collaborators of the R.I.T.I. (Italian Registry of Infantile Thrombosis) , Patrizia Accorsi , Gabriella Aceto , Gabriella Agnoletti , Manuela Agostini , Angela Alfarano , Elena Altieri , Carolina Amador , Camilla Antonelli , Vittoria Arena , Francesca Asta , Laura Baggio , Elisa Ballardini , Margherita Baracetti , Eugenio Baraldi , Laura Barberis , Elena Barisone , Letizia Basso Anne , Nadia Battajon , Iliana Bersani , Giada Biddeci , Roberta Biffanti , Maria Bonardi Claudia , Roberto Bonaudo , Clementina Boniver , Gianluca Boscarol , Roberto Bottino , Giulia Bravar , Ilaria Brizzi , Noemi Brolatti , Annabella Braguglia , Brunetta Guaragni , Samuela Bugin , Luigi Calvo Pier , Antonella Capasso , Donatella Capodiferro , Alessia Cappelleri , Teresa Cascarano Maria , Susanna Casellato , Tommaso Casini , Serena Catarzi , Elena Cavaliere , Elena Cavicchiolo Maria , Silvia Celestino , Elena Celle Maria , Nicola Centonze , Alessia Cerutti , Roksana Chakrokh , Chiara Offer , Elisabetta Chiodin , Gaetano Chirico , Natalia Chukhlantseva , Paola Cifarelli , Giulia Cinelli , Marisa Coinu , Clara Colonna , Donatella Comito , Alessandra Corato , Maria Cordelli Duccio , Giovanni Crichiutti , Ida Cursio , Arianna Dagri , Beatrice De Maria , Giovanni Del Borrello , Francesca Di Rienzo , Nicoletta Doglioni , Valentina Dolcemascolo , Andrea Dotta , Paola Drigo , Pietro Drimaco , Serena Ellero , Alessandra Falcone , Ambra Fantauzzi , Daniela Farinasso , Michela Ferilli , Silvia Festa , Maximilian Fischer , Thomas Foiadelli , Ilaria Fotzi , Rosa Francavilla , Paola Freschi , Marcella Gaffuri , Elena Gallo , Lisa Gamalero , Claudia Gandioli , Sergio Garuccio , Diletta Gentile , Marco Ghionzoli , Paola Giliberti , Filippo Greco , Chiara Guariento , Isotta Guidotti , Alessandro Iodice , Augusta Janes , Elena Laghi , Elisabetta Lampugnani , Giuseppe Lassandro , Maria Laverda Anna , Alessandra Lazzerotti , Meragliotta Patrizia Lo Tartaro , Martina Lombardini , Eleonora Lorenzon , Nicoletta Mainini , Michela Massoud , Valeria Materia , Raffaele Mattera , Isabella Mauro , Federico Melani , Mariaclaudia Meli , Giovanni Messina , Sonia Monticone , Marzia Moras , Ilaria Negro , Giorgio Olzai , Simone Pancani , Maria Pandolfi , Annalisa Passariello , Alice Passarini , Eva Passone , Myriam Pastorino , Veronica Pegoraro , Serena Pennoni , Giorgio Perilongo , Anna Pozzessere , Dario Pruna , Anna Pusiol , Caterina Putti Maria , Ivana Rabbone , Maurizio Radicioni , Salvatore Renna , Luisa Ricci Maria , Alessandro Rimini , Sara Rivellini , Gianluca Rustioni , Sabrina Salvadori , Valentina Santoiemma , Nicola Santoro , Michele Schiavulli , Sofia Sebellin , Michela Sesta , Massimo Soffiati , Monica Sorbo , Giuseppina Spanedda , Valeria Stangalini , Salvatore Stasolla , Giorgia Tanzi , Tiziana Testa , Federica Teutonico , Giuseppina Timpani , Irene Toldo , Sandra Trapani , Roberto Vaccari , Marilena Vecchi , Giovanni Vento , Daniele Veraldi , Giovanna Villa , Gianluca Visintin , Cesare Zambelloni , Francesco Zellini TITLE=The new Italian registry of infantile thrombosis (RITI): A reflection on its journey, challenges and pitfalls JOURNAL=Frontiers in Pediatrics VOLUME=11 YEAR=2023 URL=https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2023.1094246 DOI=10.3389/fped.2023.1094246 ISSN=2296-2360 ABSTRACT=Introduction

Thrombotic events in neonates and children represent a rare although severe occurrence in view of the associated risk of mortality and sequelae. Quality evidence is limited in this field, and registry studies provide an essential base for research. The aim of this paper is to present the new Italian Registry of Infantile Thrombosis (RITI), set it into the scene of international thrombosis and stroke registries, and provide some insight on the challenges associated with registry management.

Methods

We present the detailed structure and content of the new RITI registry, a brief overview of its main data, and a reflection on its features, pitfalls and the main challenges related to its management.

Results

The RITI, initially started in 2007 and officially re-launched in 2017 after structural modifications, is a non-interventional retrospective and prospective registry study collecting data on neonatal and pediatric patients (0–18 years) who experienced a systemic or cerebral thrombotic event in Italy. The RITI is managed by a multidisciplinary team with expertise in pediatric thrombosis, and participation is open to all Italian physicians, on a voluntary basis. The overall aim of the registry is to acquire new evidence to better characterize the population of children with thrombotic events and improve their management and outcome. 48 Italian pediatric and intensive care units are actively involved in the RITI, including 85 medical doctors from 16 Italian regions. A total of 1,001 neonates and children affected by cerebral or systemic thrombosis have been enrolled.

Discussion

The RITI is one of the largest available European registries of neonatal and pediatric thrombosis. National registries like the RITI represent a model for the study of rare conditions based on multidisciplinary and multicenter collaboration, aimed at overcoming the limitations due to small populations of patients, and creating a network of experts for patient referral and continuous education. Moreover, registry studies have a pivotal role in the research on pediatric thrombosis, due to the limited feasibility of high-quality studies. In our experience, the main critical stages, pitfalls and challenges in registry management include adequate registry designing, diffusion, data completeness and quality control.