RecruitingNCT05773651

Rare Tumours in Children and Adolescents (STEP)

Rare Tumours in Children and Adolescents (STEP 2.0) - Register for the Documentation of Rare Tumours in Children and Adolescents

Sponsor

University Hospital Tuebingen

Enrollment

10,000 participants

Start Date

Jan 11, 2023

Study Type

OBSERVATIONAL

Conditions

Rare Diseases

Summary

The aim of the STEP registry is to collect and evaluate experience and data on the diagnosis and treatment of rare childhood tumors in order to use the knowledge gained to improve the treatment prospects for our patients. The rarity of a disease should not be a disadvantage for the young patients.

Eligibility

Min Age: 1 DayMax Age: 18 Years

Inclusion Criteria4

Diagnosis of a rare solid tumor
Age at diagnosis: Neonatal period to 18 years (In the case of young adults, registration in the database and/or referral to advisory contact persons within the framework of the competence network can take place upon request and after declaration of consent.)
Information, education, written consent of the patient or the guardian
Not recorded in any of the existing clinical studies/ registers of the German Society for Pediatric Oncology and Hematology (GPOH)

Exclusion Criteria2

Registration of the tumor diagnosis in a prospective therapy study/ another clinical registry of the GPOH
Lack of information, explanation and/or written consent of the patient or the legal guardian.

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Interventions

OTHERData collection

The data collection includes, among other things: Diagnosis of the rare tumor (pathological findings/ reference pathological findings), full name, birth date, gender, clinical registry inclusion and exclusion criteria met - yes / no, signed declaration of consent-yes / no, if yes: date of signature