RB-registry: a clinical registry for prospective data on retinoblastoma epidemiology and clinical course

RB-registry: a clinical registry for prospective data on retinoblastoma epidemiology and clinical course - RB-Registry

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00005423

Enrollment

550

Registered

2013-12-10

Start date

2013-11-04

Completion date

Unknown

Last updated

2025-10-06

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

C69.2

Interventions

Group 1: In RB- registry, prospective data on retinoblastoma epidemiology and clinical course will be assessed regardless of choice of therapy. Long term follow-up data of patients with standard thera

Eligibility

Sex/Gender

All

Age

1 Days to 17 Years

Inclusion criteria

Inclusion criteria: • age at diagnosis younger than 18 years • confirmed initial diagnosis of retinoblastoma • new diagnosed constitutional pathogenic RB1 variant • other pediatric eye tumor • confirmed other malignancy in patients with constitutional RB1 variant • no retinoblastoma-specific treatment prior to inclusion in RB-Registry • written informed consent of the primary caregivers • resident of Germany or Austria

Exclusion criteria

Exclusion criteria: Patients who do not fulfill the inclusion criteria

Design outcomes

Primary

Measure	Time frame
distribution of retinoblastoma international classification of retinoblastoma (ICRB) groups and international retinoblastoma staging system (IRSS) stages for patients diagnosed in Germany and Austria.	—

Secondary

Measure	Time frame
Identification of variables influencing the course of disease in retinoblastoma patients,	—

Countries

Austria, Germany

Contacts

Public ContactPetra Ketteler

Universitätsklinikum Essen

rb-studie@uk-essen.de0201 723 2003

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Feb 4, 2026