Rare Diseases
Conditions
Keywords
Epidemiological data collection, Rare tumors in children, Rare tumors in adolescents, Clinical data collection
Brief 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.
Detailed description
The objective of the STEP registry is to optimise the diagnosis and treatment of patients with rare tumour diseases in childhood and adolescence. Therefore, a continuous prospective collection of clinical data on rare paediatric tumours is conducted to improve the understanding of these tumours. Beyond analysis of clinical data, further scientific research on the biological and molecular genetic characteristics of these tumours is performed. These data and a close collaboration with international partners, especially the European EXPeRT group, enable the improvement of treatment recommendations for these tumours along with establishment a global interdisciplinary network of rare tumour specialists.
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
Sponsors
University Hospital Tuebingen
Study design
Observational model
CASE_ONLY
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
1 Days to 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.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Event-free survival | 5 years | Period between study entry and failure of induction therapy, recurrence or death from any cause is measured. |
Countries
Germany
Contacts
Primary ContactInes Brecht, PD Dr. med.
Backup ContactMichael Abele, Dr. med.
Outcome results
None listed