An observational study in Rare Diseases, sponsored by University Hospital Tuebingen. Recruiting at 1 site in Germany. Open to participants aged 1 Day to 18 Years. Per ClinicalTrials.gov, last updated 2024-10-01.
Sponsored by University Hospital Tuebingen · Observational
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.
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.
208 studies on the registry are indexed under Rare Diseases; 112 are open to participants now.
This study's planned enrollment of 10,000 is above the median of 200 across 127 observational studies indexed under Rare Diseases.
Browse Rare Diseases studies →University Hospital Tuebingen is the lead sponsor of 490 studies on the registry; 108 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Children and adolescents with rare solid tumors from primary care clinic, university hospitals, specialty centers, ...
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
Prospective epidemiological and clinical data collection of subjects with diagnosis of a rare solid tumor.
Other: 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
Event-free survival
Period between study entry and failure of induction therapy, recurrence or death from any cause is measured.
Time frame: 5 years
Plan to share: Yes — The STEP Register will provide data in a pseudonymised manner to national and international databases set up to optimize the diagnosis and treatment of rare tumors in children and adolescents
Time frame: Data will become available after analysis and unlimited.
Started Jan 2023 (actual). Primary completion is estimated for Jan 2050, 324 months after the start.
Of 71 observational studies under Rare Diseases, half reached primary completion within 124 months of starting (the median), counting those still running; a quarter within 67 and three quarters within 183. This study's planned 324 months is above that.
Rare Diseases covers many different conditions, not one, so the studies compared here vary widely. Read these figures as a rough guide.
How these figures are worked out, and which studies are left out of them.
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
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