Global Survey of Trilateral Retinoblastoma: Incidence and Outcomes

Status: Recruiting
Location: See location...
Intervention Type: Diagnostic test
Study Type: Observational
SUMMARY

Patients with heritable retinoblastoma are at risk to develop an intracranial brain tumor, which is often fatal. The investigators intend to look at the incidence and survival of trilateral retinoblastoma (which is a brain tumor that can either be located in the pineal gland or elsewhere in the brain) in retinoblastoma patients globally. All retinoblastoma patients from participating centers will be included. The investigators hypothesize that the apparent incidence of trilateral retinoblastoma (especially the usually later diagnosed pineal trilateral retinoblastoma) in low-income countries will be lower because of low chances of surviving the ocular tumors at about 50% and also because of possible under-diagnosis. Therefore, as retinoblastoma care improves in low-income countries the incidence of (pineal) trilateral retinoblastoma might go up. Knowledge about incidence and survival can help improve health practices in parts of the world where this might be needed. Therefore this global study firstly aims 1) to evaluate survival after trilateral retinoblastoma and factors influencing survival and 2) to evaluate incidence of trilateral retinoblastoma by country income level. The study will run from 2024 through 2027.

Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:

• patients diagnosed with retinoblastoma

Locations
Other Locations
Netherlands
Amsterdam UMC
RECRUITING
Amsterdam
Contact Information
Primary
Marcus C de Jong, MD PhD
mc.dejong@amsterdamumc.nl
+31(0)20-4443047
Backup
Pim de Graaf, MD PhD
p.degraaf@amsterdamumc.nl
+31(0)20-4443047
Time Frame
Start Date: 2024-01-01
Estimated Completion Date: 2029-12-31
Participants
Target number of participants: 4351
Sponsors
Leads: Amsterdam UMC, location VUmc

This content was sourced from clinicaltrials.gov