Neoplasms

All Conditions

Skin and Connective Tissue Diseases

Blood and Lymph Conditions

Immune System Diseases

Nervous System Diseases

Respiratory Tract (Lung and Bronchial) Diseases

Urinary Tract, Sexual Organs, and Pregnancy Conditions

Behaviors and Mental Disorders

Rare Diseases

Carcinoma

Melanoma

Neuroendocrine Tumors

Lymphoproliferative Disorders

Teratoma

Myeloproliferative Disorders

Carcinoma in Situ

Central Nervous System Neoplasms

Nervous System Neoplasms

Fibromatosis, Aggressive

Ganglioneuroma

Histiocytosis, Langerhans-Cell

Histiocytosis

Dermoid Cyst

Nephroma, Mesoblastic

Aggression

Fibroma

Bone Marrow Diseases

Hematologic Diseases

Neoplasms, Glandular and Epithelial

Neoplasms by Histologic Type

Lymphatic Diseases

Immunoproliferative Disorders

Neoplasms, Germ Cell and Embryonal

Neoplasms, Fibrous Tissue

Neoplasms, Connective Tissue

Neoplasms, Connective and Soft Tissue

Neuroectodermal Tumors

Neuroectodermal Tumors, Primitive

Neoplasms, Nerve Tissue

Lung Diseases

Lung Diseases, Interstitial

Respiratory Tract Diseases

Kidney Neoplasms

Urologic Neoplasms

Urogenital Neoplasms

Urogenital Diseases

Female Urogenital Diseases

Pregnancy Complications

Female Urogenital Diseases and Pregnancy Complications

Kidney Diseases

Urologic Diseases

Male Urogenital Diseases

Neoplasms, Neuroepithelial

Nevus, Pigmented

Nevus

Nevi and Melanomas

Skin Neoplasms

Skin Diseases

Neuroendocrine Tumor

Chronic Myeloproliferative Disorders

Desmoid Tumor

Gangliocytoma

Langerhans Cell Histiocytosis

Congenital Mesoblastic Nephroma

Neuroepithelioma

Patients undergo medical data review to create a Childhood Cancer Registry. Patients also undergo collection of biospecimen samples (e.g., tissue, blood, bone marrow, plasma, serum, buccal swab, saliva, cerebrospinal fluid, or urine).

Cytology Specimen Collection Procedure

Medical Chart Review

Site Public Contact

Matthew A. Kutny

Hamayun Imran

Brenda J. Wittman

Joseph C. Torkildson

Alok K. Kothari

Holly E. Pariury

David L. Becton

Robert M. Cooper

Anna B. Pawlowska

Albert Kheradpour

Jacqueline N. Casillas

Fariba Navid

Fataneh (Fae) Majlessipour

Satiro N. De Oliveira

Karen S. Fernandez

Jennifer G. Michlitsch

Aarati V. Rao

Elyssa M. Rubin

Jay Michael S. Balagtas

Yung S. Yim

Marcio H. Malogolowkin

William D. Roberts

Yoko T. Udaka

Arun A. Rangaswami

Shivani Upadhyay

Kelly W. Maloney

Jennifer J. Clark

Michael S. Isakoff

Farzana Pashankar

Scott M. Bradfield

Caileigh Pudela

Jeffrey S. Dome

Hector M. Rodriguez-Cortes

Emad K. Salman

William B. Slayton

Iftikhar Hanif

Julio C. Barredo

Ziad A. Khatib

Fouad M. Hajjar

Amy A. Smith

Erlyn C. Smith

Jennifer L. Mayer

Andrew J. Galligan

Don E. Eslin

Muaz A. Alrazzak

William T. Cash

Colleen H. McDonough

Sushmita Nair

Andrew L. Pendleton

Wade T. Kyono

Kara-Marie H. Delaney

Martha M. Pacheco

David O. Walterhouse

Mary L. Schmidt

Susan L. Cohn

Eugene Suh

Rebecca E. McFall

Prerna Kumar

Gregory P. Brandt

Sandeep Batra

Bassem I. Razzouk

Samantha L. Mallory

David S. Dickens

James T. Badgett

Ashok B. Raj

Lolie C. Yu

Craig Lotterman

Daniel L. Callaway

Aaron R. Weiss

Teresa A. York

Jason M. Fixler

Kenneth J. Cohen

Allen I. Stering

Suzanne Shusterman

Joanna G. Luty

Stefanie R. Lowas

Rajen Mody

Alissa M. Martin

Laura E. Agresta

Kathleen J. Yost

Laura K. Gowans

Michael K. Richards

Emily G. Greengard

Wendy Allen-Rhoades

Douglas Hawkins

This study gathers health information for the Project: Every Child for younger patients with cancer. Gathering health information over time from younger patients with cancer may help doctors find better methods of treatment and on-going care.

PRIMARY OBJECTIVES:

I. To maintain a Childhood Cancer Registry for infants, children, adolescents, and young adults with cancer.

II. To utilize clinical and biological data to help determine eligibility or stratification, based on childhood cancer disease classification schemas, for potential enrollment of research subjects onto Children's Oncology Group (COG) therapeutic clinical trials.

III. To develop a well annotated childhood cancer biorespository for current and future research through the collection of biospecimens (at diagnosis, time of progression, time of recurrence and/or post-mortem), including tumor, host and when feasible parental germline deoxyribonucleic acid (DNA); and key clinical data, including presentation, diagnostic, staging, summary treatment, and outcome information, from every child diagnosed with cancer at COG institutions.

IV. To allow use of registry data for permission to be contacted in the future to consider participating in non-therapeutic and prevention research studies involving the child or their parents.

OUTLINE:

Patients undergo medical data review to create a Childhood Cancer Registry. Patients also undergo collection of biospecimen samples (e.g., tissue, blood, bone marrow, plasma, serum, buccal swab, saliva, cerebrospinal fluid, or urine).

Tissue, blood, bone marrow, plasma, serum, buccal swab, saliva, cerebrospinal fluid, urine

Project: Every Child for Younger Patients With Cancer

The Project: EveryChild Protocol: A Registry, Eligibility Screening, Biology and Outcome Study

The number of patients who agree to be in the Biobanking part of the study and have leftover tumor tissue and some normal blood, bone marrow, or other tissue saved for future research.

National Cancer Institute (NCI)

Children's Oncology Group

Neuroblastoma

Ganglioneuroblastoma

Neuroectodermal Tumors, Primitive, Peripheral

Additional blood sampling (not mandatory)

No Intervention NA

Gudrun Schleiermacher, MD,PhD

Priyanka Devi-Marulkar, PharmD

Antoine GOURMEL, MD

Stéphanie PROUST, MD

Veronique LAITHIER, MD

Julie TANDONNET, MD

Liana CARAUSU, MD

Damien BODET, MD

Justyna KANOLD, MD

Claire BRIANDET, MD

Cécile PERRET, MD

Anne-Sophie DEFACHELLES, MD

Benoît DUMONT, MD

Carole COZE, MD

Tasnime AKBARALY, MD

Estelle THEBAUD, MD

Joy BENADIBA, MD

Gudrun SCHLEIERMACHER, MD

Arnaud PETIT, MD

Chrystelle DUPRAZ, MD

Claire PLUCHART, MD

Sophie TAQUE, MD

Aude MARIE CARDINE, MD

Claire BERGER, MD

Sarah JANNIER, MD

Marion GAMBART, MD

Julien LEJEUNE, MD

Ludovic MANSUY, MD

Claudia PASQUALINI, MD

The SIOPEN BIOPORTAL is a prospective non-therapeutic multi-centre international study aimed at developing an international Registry linked to a Virtual Biobank for all the patients with peripheral neuroblastic tumor within countries of the SIOPEN network. The overall aim of this study is to provide a GDPR-compliant framework to collect basic clinical annotations, biological and genetic features and information about the location on biospecimens for all the patients with a peripheral neuroblastic tumor including neuroblastoma, ganglioneuroblastoma and ganglioneuroma in the SIOPEN network.

This study will support data and sample management and intensify cross-borders data and sample sharing fostering translational and clinical research. The post-hoc hypothesis formulated based on the data generated in this study will be used as statistical basis for future precision medicine programs based on improved biological characterization, patient stratification and therapeutic management.

SIOPEN BIOPORTAL, An International Registry Linked to a Virtual Biobank for Patients With Peripheral Neuroblastic Tumours

Registry Outcome: Rate of patients having their clinical data registered throughout their treatment and follow-up from the total of patients registered

Virtual Biobank Outcome: Rate of patients for whom information on biological samples/material collected and stored in SIOPEN is available from the total of patients registered

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization
Project: Every Child for Younger Patients With Cancer	NCT02402244	Carcinoma In Si... Central Nervous... Childhood Immat... Childhood Lange... Childhood Matur... Congenital Meso... Desmoid Fibroma... Ganglioneuroma Lymphoprolifera... Malignant Solid... Melanocytic Neo... Myeloproliferat... Neuroendocrine ... Stromal Neoplas...	Cytology Specim... Medical Chart R...	- 25 Years	Children's Oncology Group
SIOPEN BIOPORTAL, An International Registry Linked to a Virtual Biobank for Patients With Peripheral Neuroblastic Tumours	NCT05192980	Neuroblastoma Ganglioneurobla... Ganglioneuroma	No Intervention...	-	Institut Curie
Project: Every Child for Younger Patients With Cancer	NCT02402244	Carcinoma In Si... Central Nervous... Childhood Immat... Childhood Lange... Childhood Matur... Congenital Meso... Desmoid Fibroma... Ganglioneuroma Lymphoprolifera... Malignant Solid... Melanocytic Neo... Myeloproliferat... Neuroendocrine ... Stromal Neoplas...	Cytology Specim... Medical Chart R...	- 25 Years	Children's Oncology Group
SIOPEN BIOPORTAL, An International Registry Linked to a Virtual Biobank for Patients With Peripheral Neuroblastic Tumours	NCT05192980	Neuroblastoma Ganglioneurobla... Ganglioneuroma	No Intervention...	-	Institut Curie
An Investigational Scan (68Ga-DOTATATE PET/CT) in Diagnosing Pediatric Metastatic Neuroendocrine Tumors	NCT04040088	Ganglioneurobla... Ganglioneuroma Neuroblastoma	Computed Tomogr... Gallium Ga 68-D... Positron Emissi...	- 30 Years	Mayo Clinic
Abdominal Neuroblastoma Laparoscopic Surgery Risk Factors Stratification	NCT06296732	Neuroblastoma Ganglioneuroma Ganglioneurobla...	Duration of sur...	1 Day - 18 Years	Federal Research Institute of Pediatric Hematology, Oncology and Immunology
International Congenital Central Hypoventilation Syndrome (CCHS) Registry	NCT03088020	Congenital Cent...		-	Ann & Robert H Lurie Children's Hospital of Chicago

Spots Global Cancer Trial Database for ganglioneuroma