Collecting data on rare tumors in children and adolescents
Rare Tumours in Children and Adolescents (STEP 2.0) - Register for the Documentation of Rare Tumours in Children and Adolescents
This study is collecting information on rare tumors in kids and teens to help doctors improve how they diagnose and treat these conditions.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 10000 (estimated) |
| Ages | 1 Day to 18 Years |
| Sex | All |
| Sponsor | University Hospital Tuebingen Academic / other |
| Locations | 1 site (Tübingen) |
| Trial ID | NCT05773651 on ClinicalTrials.gov |
What this trial studies
The STEP registry aims to gather and analyze clinical data on rare tumors affecting children and adolescents to enhance diagnosis and treatment strategies. By conducting a continuous prospective collection of data, the study seeks to improve understanding of these rare conditions and their biological characteristics. Collaboration with international partners, particularly the European EXPeRT group, will facilitate the development of better treatment recommendations and establish a global network of specialists in rare tumors.
Who should consider this trial
Good fit: Ideal candidates include children and adolescents diagnosed with a rare solid tumor between the ages of neonatal to 18 years.
Not a fit: Patients who are already registered in other clinical studies or registries related to their tumor diagnosis may not benefit from this study.
Why it matters
Potential benefit: If successful, this study could lead to improved treatment options and outcomes for young patients with rare tumors.
How similar studies have performed: Other studies focusing on rare diseases have shown success in improving treatment outcomes through data collection and collaboration, indicating a promising approach.
Eligibility criteria
Show full inclusion / exclusion 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.
Where this trial is running
Tübingen
- University Hospital Tübingen — Tübingen, Germany (Recruiting)
Study contacts
- Study coordinator: Ines Brecht, PD Dr. med.
- Email: ines.brecht@med.uni-tuebingen.de
- Phone: +49 7071 29
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.