Data 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
Study 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
Sex
ALL
Min age
1 Day
Max age
18 Years
Healthy volunteers
No
Inclusion Criteria:
* 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 Criteria:
* 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.
Primary outcome measure(s)
Event-free survival — 5 years Period between study entry and failure of induction therapy, recurrence or death from any cause is measured.
Trial sites (1)
Facility
City
Region
Status
University Hospital Tübingen
Tübingen
Germany
Recruiting
More University Hospital Tuebingen trials in Germany
This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.
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