Afrida Ahmed
Clinicar Research coordinator. McGuill node.
Who we are
The NRTO is an international community integrated by researchers with expertise in the field of rare tumors of the ovary, associated collaborators, patients, patients advocates, clinical ambassadors and patient foundations around the globe
The NRTO community
The NRTO organizational chart
The registries
The NRTO registries are designed to collect clinical information and biological samples that support research aimed at enhancing our understanding of rare tumors of the ovary and the genetic variants that predispose individuals to their development.
SCCOHT registry and biobank
SCSTs registry and biobank
SCOOTH registry and biobank
SCSTs registry and biobank
The research team
The research team is an international and multi-disciplinary group aiming to establish a world-leading Network for Rare Tumors of the Ovary (NRTO) that will provide important resources for patients, advocates, clinicians, and researchers.
Adriana Costal, MSc
Genetic Counselor
IDIBELL node
Basile Tessier
Junior Scientific
McGILL node
Barbara Rivera, PhD
PI.
IDIBELL node
Céline Domecq, MSc
biobank manager
McGILL node
Carla Roca, MSc PhD student
IDIBELL node
Cristina Rioja, PhD
Biobank and lab manager
IDIBELL node
Conxi Lazaro, PhD
Chief of clinical and molecular diagnostics
IDIBELL node
Juana Fernandez-Rodriguez, PhD
Chief of the Mouse Lab
IDIBELL node
Leora Witkowski, PhD
Clinical molecular geneticist
McGILL node
Morag Park, PhD
PI PDX unit
McGILL node
Nancy Hamel, MSc
NRTO Project manager
McGILL node
William Foulkes, PhD
PI and NRTO coordinator
McGILL node
Nairi Tchrakian
Associated pathologist
NRTO patients and patient advocates
The patients and patient advocates are an essential part in the NRTO community to actively promote the Rare Tumors of The Ovary using social media, such as Facebook or X, and organizing workshops to engage the public. Listen their stories Episode – NRTO (raretumorovary.net)
The stakeholders
Drs. McCluggage, Stewart, and Matias-Guiu, recognized as international experts, will serve as the central pathology reviewers for all questionable SCCOHTs and SCSTs in this study. They will also inform referring pathologists about the availability of the NRTO. Clinicians can get involved by contacting the principal investigators through the NRTO web portal.
International SCCOHT Consortium (Dr. Ray-Coquard, Dr. Huntsman and Dr. Weissman), other clinicians’ collaborators (e.g. Dr. Guillén-Ponce, Dr. Tischkowitz, Dr. Castillo, Dr. Gil, Dr. Pardo, Dr. Torrezan, Dr. García-Donás) are some of the clinicians involved that refer patients to the NRTO.
GETTHI (grupo español de oncología transversal y tumores huérfanos e infrecuentes) (Dr. Jesús García-Donas) refer rare tumor ovary patients to the NRTO and release all the new advances of the NRTO through their monthly newsletter published in Spain and Latin American countries.
Other databases such as the UK-based Rare Neoplasms of Gynecological Origin (RaNGO) (Dr. Hall) and the French GINECO Network (Dr. Ray-Coquard)
Oriana Sousa, MSc, is a SCCOHT survivor and a Patient Advocate trained by EUPATI. Oriana is the reference patient advocate for the NRTO patients and she has been actively involved in the design of this website.
There are four Patient Organizations associated with the NRTO: The Eve Appeal by Athena Lamnisos (London, UK), Small Cell Ovarian Cancer Foundation (SCOCF) by Maren Petersen (Sandy, UT, USA), Katie Oppo Research Fund (KORF) by Liz Oppo (Manhasset, NY, USA), Associação de Pais e Amigos de Crianças com Cancro (Acreditar) by Margarida Cruz (Lisbon, Portugal). These four Patient Organizations are an essential part in the NRTO community to actively promote the Rare Tumors of The Ovary using social media, such as Facebook or X, and organizing workshops to engage the public.
Creation of the NRTO was funded by a research grant from the US Department of Defense to Drs. William Foulkes, Barbara Rivera and Morag Park.
