RECRUITING

International PPB/DICER1 Registry

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Conditions

Pleuropulmonary BlastomaSertoli-Leydig Cell TumorDICER1 SyndromeCystic NephromaWilms TumorPineoblastomaRenal SarcomaNodular Hyperplasia of ThyroidNasal Chondromesenchymal HamartomaCiliary Body MedulloepitheliomaNeuroblastomaPituitary CancerEmbryonal RhabdomyosarcomaOvarian SarcomaGynandroblastomaThyroid CarcinomaEmbryonal Rhabdomyosarcoma of Vagina (Diagnosis)Embryonal Rhabdomyosarcoma of Uterus (Diagnosis)Embryonal Rhabdomyosarcoma of CervixPPBDICER1SLCTCNDICER1 mutationASKThyroid NodulesNCMHCBMEERMSPeritoneal PPBpPPBmultinodular goiterPPB Type IPPB Type IIPPB Type IIIPPB Type Ir

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Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

Pleuropulmonary blastoma (PPB) is a rare malignant neoplasm of the lung presenting in early childhood. Type I PPB is a purely cystic lesion, Type II is a partially cystic, partially solid tumor, Type III is a completely solid tumor. Treatment of children with PPB is at the discretion of the treating institution. This study builds off of the 2009 study and will also seek to enroll individuals with DICER1-associated conditions, some of whom may present only with the DICER1 gene mutation, which will help the Registry understand how these tumors and conditions develop, their clinical course and the most effective treatments.

Official Title

International Pleuropulmonary Blastoma/DICER1 Registry (for PPB, DICER1 and Associated Conditions)

Quick Facts

Study Start:2016-12-06
Study Completion:2035-12-06
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT03382158

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:Yes
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. 1. Known or suspected PPB or related thoracic tumor
  2. 2. Known or suspected sex-cord stromal tumor including Sertoli-Leydig cell tumor and gynandroblastoma (males or females)
  3. 3. Other known or suspected DICER1-related condition including ovarian sarcoma, cystic nephroma, renal sarcoma, pineoblastoma, pituitary blastoma, nasal chondromesenchymal hamartoma, ciliary body medulloepithelioma and others
  4. 4. Individuals with known or suspected DICER1 pathogenic variation regardless of whether they have an established DICER1-associated condition
  5. 5. Informed consent by patient/ or parent/guardian (also, where appropriate: assent and HIPAA consent)
  1. Pregnancy or breastfeeding
  2. Severe psychiatric disorders
  3. Active substance abuse
  4. Unstable medical conditions
  5. Inability to comply with study requirements

Contacts and Locations

Study Contact

Kris Ann P Schultz, MD
CONTACT
612-813-7121
krisann.schultz@childrensmn.org
Paige HR Mallinger, MS
CONTACT
612-813-7115
paige.mallinger@childrensmn.org

Principal Investigator

Kris Ann P Schultz, MD
PRINCIPAL_INVESTIGATOR
Children's Minnesota

Study Locations (Sites)

Children's Minnesota
Minneapolis, Minnesota, 55404
United States

Collaborators and Investigators

Sponsor: Children's Hospitals and Clinics of Minnesota

  • Kris Ann P Schultz, MD, PRINCIPAL_INVESTIGATOR, Children's Minnesota

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2016-12-06
Study Completion Date2035-12-06

Study Record Updates

Study Start Date2016-12-06
Study Completion Date2035-12-06

Terms related to this study

Keywords Provided by Researchers

  • pleuropulmonary blastoma
  • PPB
  • DICER1
  • SLCT
  • Sertoli-Leydig Cell Tumor
  • Cystic Nephroma
  • CN
  • DICER1 mutation
  • DICER1 syndrome
  • Wilms Tumor
  • Pineoblastoma
  • Renal Sarcoma
  • ASK
  • Nodular Hyperplasia of Thyroid
  • Thyroid Nodules
  • Thyroid Carcinoma
  • Nasal Chondromesenchymal Hamartoma
  • NCMH
  • Ciliary Body Medulloepithelioma
  • CBME
  • Neuroblastoma
  • Pituitary Cancer
  • Embryonal Rhabdomyosarcoma
  • ERMS
  • Ovarian Sarcoma
  • Gynandroblastoma
  • Peritoneal PPB
  • pPPB
  • multinodular goiter
  • PPB Type I
  • PPB Type II
  • PPB Type III
  • PPB Type Ir

Additional Relevant MeSH Terms

  • Pleuropulmonary Blastoma
  • Sertoli-Leydig Cell Tumor
  • DICER1 Syndrome
  • Cystic Nephroma
  • Wilms Tumor
  • Pineoblastoma
  • Renal Sarcoma
  • Nodular Hyperplasia of Thyroid
  • Nasal Chondromesenchymal Hamartoma
  • Ciliary Body Medulloepithelioma
  • Neuroblastoma
  • Pituitary Cancer
  • Embryonal Rhabdomyosarcoma
  • Ovarian Sarcoma
  • Gynandroblastoma
  • Thyroid Carcinoma
  • Embryonal Rhabdomyosarcoma of Vagina (Diagnosis)
  • Embryonal Rhabdomyosarcoma of Uterus (Diagnosis)
  • Embryonal Rhabdomyosarcoma of Cervix