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Trial Title:
Rare Tumours in Children and Adolescents (STEP)
NCT ID:
NCT05773651
Condition:
Rare Diseases
Conditions: Official terms:
Rare Diseases
Conditions: Keywords:
Epidemiological data collection
Rare tumors in children
Rare tumors in adolescents
Clinical data collection
Study type:
Observational [Patient Registry]
Overall status:
Recruiting
Study design:
Time perspective:
Prospective
Intervention:
Intervention type:
Other
Intervention name:
Data collection
Description:
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
Arm group label:
Rare tumor disease
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.
Criteria for eligibility:
Study pop:
Children and adolescents with rare solid tumors from primary care clinic, university
hospitals, specialty centers, ...
Sampling method:
Non-Probability Sample
Criteria:
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.
Gender:
All
Minimum age:
1 Day
Maximum age:
18 Years
Healthy volunteers:
No
Locations:
Facility:
Name:
University Hospital Tübingen
Address:
City:
Tübingen
Zip:
72076
Country:
Germany
Status:
Recruiting
Contact:
Last name:
Ines Brecht, PD Dr. med.
Phone:
+49 7071 29
Phone ext:
81380
Email:
ines.brecht@med.uni-tuebingen.de
Contact backup:
Last name:
Michael Abele, Dr. med.
Phone:
+49 7071 29
Phone ext:
61387
Email:
michael.abele@med.uni-tuebingen.de
Start date:
January 11, 2023
Completion date:
January 2055
Lead sponsor:
Agency:
University Hospital Tuebingen
Agency class:
Other
Source:
University Hospital Tuebingen
Record processing date:
ClinicalTrials.gov processed this data on November 12, 2024
Source: ClinicalTrials.gov page:
https://clinicaltrials.gov/ct2/show/NCT05773651
http://www.seltene-tumoren.de/
