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

NCT04158284 | Recruiting DMC

• 1 other identifier: KRANIOPHARYNGEOM Registry 2019
• Study Type: observational
• Target: 90
• Locations: 1 country
• Sites: 1

Brief Summary

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.

Conditions

Craniopharyngioma; Obesity

Keywords

Quality of life; Endocrinology; Oncology; Hypothalamus; Irradiation; Neurosurgery; Pediatric Brain tumors

Outcome Measures

Primary Outcomes (2)

• Overall Survival

  Overall survival as measured by Kaplan Meyer analyses

  3 years follow-up

• Progression-free Survival (PFS)

  Progression-free survival as measured by Kaplan Meyer analyses

  3 years follow-up

Secondary Outcomes (1)

• Quality of life (QoL)

  3 years follow-up

Eligibility Criteria

• Age: 1 Day - 18 Years
• Sex: all
• Healthy Volunteers: No
• Age Groups: Child (0-17), Adult (18-64)
• Sampling Method: Probability Sample

Study Population

Newly diagnosed patients (≤ 18 years of age) with childhood-onset craniopharyngioma

You may qualify if:

• Diagnosed with craniopharyngioma for the first time
• Age at diagnosis 18 years or less of age
• Agreement from patient's parents or legal guardian as well as the patient

You may not qualify if:

• Age at diagnosis over 18 years of age
• Diagnosis different from craniopharyngioma

Sponsors & Collaborators

• Klinikum Oldenburg gGmbH: lead
• German Society for Pediatric Oncology and Hematology GPOH gGmbH: collaborator
• Deutsche Gesellschaft für Kinderendokrinologie und Diabetologie (DGKED): collaborator
• Deutsche Gesellschaft für Endokrinologie (DGE): collaborator
• Arbeitsgemeinschaft Pädiatrische Radioonkologie (APRO): collaborator
• Deutschen Gesellschaft für Radioonkologie (DEGRO): collaborator

Study Sites (1)

Klinikum Oldenburg

Oldenburg, Lower Saxony, 26133, Germany

RECRUITING

Related Publications (4)

• Sowithayasakul P, Beckhaus J, Ozyurt J, Bison B, Friedrich C, Muller HL. Prolactin serum concentrations in childhood-onset craniopharyngioma patients. J Endocrinol Invest. 2025 Sep;48(9):2041-2051. doi: 10.1007/s40618-025-02622-4. Epub 2025 Jun 7.

  PMID: 40481916 DERIVED

• Mann-Markutzyk LV, Beckhaus J, Ozyurt J, Mehren A, Friedrich C, Muller HL. Daytime sleepiness and health-related quality of life in patients with childhood-onset craniopharyngioma. Sci Rep. 2025 Mar 19;15(1):9407. doi: 10.1038/s41598-025-94384-5.

  PMID: 40108339 DERIVED

• Wagener K, Beckhaus J, Boekhoff S, Friedrich C, Muller HL. Sporadic and neurofibromatosis type 2-associated meningioma in children and adolescents. J Neurooncol. 2023 Jul;163(3):555-563. doi: 10.1007/s11060-023-04344-0. Epub 2023 Jul 4.

  PMID: 37402092 DERIVED

• Beckhaus J, Friedrich C, Boekhoff S, Calaminus G, Bison B, Eveslage M, Timmermann B, Flitsch J, Muller HL. Outcome after pediatric craniopharyngioma: the role of age at diagnosis and hypothalamic damage. Eur J Endocrinol. 2023 Mar 2;188(3):lvad027. doi: 10.1093/ejendo/lvad027.

  PMID: 36857103 DERIVED

MeSH Terms

Conditions

Craniopharyngioma; Obesity; Neoplasms

Condition Hierarchy (Ancestors)

Neuroectodermal Tumors; Neoplasms, Germ Cell and Embryonal; Neoplasms by Histologic Type; Neoplasms, Nerve Tissue; Overweight; Overnutrition; Nutrition Disorders; Nutritional and Metabolic Diseases; Body Weight; Signs and Symptoms; Pathological Conditions, Signs and Symptoms

Central Study Contacts

Hermann L Mueller, MD

CONTACT

+49 441 403; mueller.hermann@klinikum-oldenburg.de

Svenja Boekhoff

CONTACT

+49 441 403; boekhoff.svenja@klinikum-oldenburg.de

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Target Duration: 3 Years
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Professor MD

Study Record Dates

• First Submitted: October 10, 2019
• First Posted: November 8, 2019
• Study Start: October 1, 2019
• Primary Completion: June 30, 2024
• Study Completion: June 30, 2024
• Last Updated: March 7, 2024

Record last verified: 2024-03

Locations

DE (1)