Multicenter Registry for Patients With Childhood.Onset Craniopharyngioma, Xanthogranuloma, Cysts of Rathke’s Pouch, Meningioma, Pituitary Adenoma, Arachnoid Cysts

Overview

KRANIOPHARYNGEOM Registry 2019 will prospectively collect and descriptively analyse data on diagnostics, treatment, and follow-up of patients with craniopharyngioma. In continuation of preceding studies also patients with xanthogranuloma, meningioma, pituitary adenoma, prolactinoma and cystic intracranial malformations will be registered.

Full Title of Study: “KRANIOPHARYNGEOM Registry 2019 Multicenter Registry for Patients With Childhood-onset Craniopharyngioma, Xanthogranuloma, Cysts of Rathke’s Pouch, Meningioma, Pituitary Adenoma, Arachnoid Cysts”

Study Type

  • Study Type: Observational [Patient Registry]
  • Study Design
    • Time Perspective: Prospective
  • Study Primary Completion Date: March 31, 2021

Clinical Trial Outcome Measures

Primary Measures

  • Overall Survival
    • Time Frame: 3 years follow-up
    • Overall survival as measured by Kaplan Meyer analyses
  • Progression-free Survival (PFS)
    • Time Frame: 3 years follow-up
    • Progression-free survival as measured by Kaplan Meyer analyses

Secondary Measures

  • Quality of life (QoL)
    • Time Frame: 3 years follow-up
    • Domains of the PedQol instrument (questionnaire for assessment of health-related QoL in childhood cancer patients.

Participating in This Clinical Trial

Inclusion Criteria

1. Diagnosed with craniopharyngioma for the first time

2. Age at diagnosis 18 years or less of age

3. Agreement from patient's parents or legal guardian as well as the patient

Exclusion Criteria

1. Age at diagnosis over 18 years of age

2. Diagnosis different from craniopharyngioma

Gender Eligibility: All

Minimum Age: N/A

Maximum Age: 18 Years

Are Healthy Volunteers Accepted: No

Investigator Details

  • Lead Sponsor
    • Klinikum Oldenburg gGmbH
  • Collaborator
    • Gesellschaft für Pädiatrische Onkologie und Hämatologie (GPOH)
  • Provider of Information About this Clinical Study
    • Principal Investigator: Prof. Dr. med. Hermann Mueller, Professor MD – Klinikum Oldenburg gGmbH
  • Overall Contact(s)
    • Hermann L Mueller, MD, +49 441 403, mueller.hermann@klinikum-oldenburg.de

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