Trilateral retinoblastoma refers to bilateral (or less often unilateral) retinoblastoma associated with an intracranial primitive neuroectodermal tumor in the pineal or suprasellar region. This syndro...
Comprehensive, easy-to-understand information about this condition
How we create this content →The documentation surrounding trilateral retinoblastoma is limited primarily due to its rarity, which restricts the scope of systematic clinical studies. As a condition that affects a small number of individuals, comprehensive data collection and characterization are challenging. Additionally, the complexity of its clinical features and the lack of identified genetic markers further contribute to the difficulties in establishing a robust clinical understanding.
To navigate the complexities of trilateral retinoblastoma, consider seeking a pediatric oncologist with experience in rare tumors or a specialist in hereditary cancer syndromes. While there are currently no identified patient organizations, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, participating in clinical trials may offer access to cutting-edge therapies and contribute to research efforts. Genetic counseling may also be beneficial, especially given the familial aspects of the condition.
There are several orphan drugs currently designated for trilateral retinoblastoma, including Episcleral Topotecan and genetically modified human adenovirus encoding human PH20, among others. These drugs are in various stages of development, aiming to improve treatment outcomes. Additionally, there is one active clinical trial related to this condition. For more information, you can explore ongoing studies at ClinicalTrials.gov: https://clinicaltrials.gov/search?cond=trilateral%20retinoblastoma.
Actionable guidance for navigating care for trilateral retinoblastoma
To navigate the complexities of trilateral retinoblastoma, consider seeking a pediatric oncologist with experience in rare tumors or a specialist in hereditary cancer syndromes. While there are currently no identified patient organizations, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, participating in clinical trials may offer access to cutting-edge therapies and contribute to research efforts. Genetic counseling may also be beneficial, especially given the familial aspects of the condition.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation surrounding trilateral retinoblastoma is limited primarily due to its rarity, which restricts the scope of systematic clinical studies. As a condition that affects a small number of individuals, comprehensive data collection and characterization are challenging. Additionally, the complexity of its clinical features and the lack of identified genetic markers further contribute to the difficulties in establishing a robust clinical understanding.
To navigate the complexities of trilateral retinoblastoma, consider seeking a pediatric oncologist with experience in rare tumors or a specialist in hereditary cancer syndromes. While there are currently no identified patient organizations, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, participating in clinical trials may offer access to cutting-edge therapies and contribute to research efforts. Genetic counseling may also be beneficial, especially given the familial aspects of the condition.
There are several orphan drugs currently designated for trilateral retinoblastoma, including Episcleral Topotecan and genetically modified human adenovirus encoding human PH20, among others. These drugs are in various stages of development, aiming to improve treatment outcomes. Additionally, there is one active clinical trial related to this condition. For more information, you can explore ongoing studies at ClinicalTrials.gov: https://clinicaltrials.gov/search?cond=trilateral%20retinoblastoma.
Actionable guidance for navigating care for trilateral retinoblastoma
To navigate the complexities of trilateral retinoblastoma, consider seeking a pediatric oncologist with experience in rare tumors or a specialist in hereditary cancer syndromes. While there are currently no identified patient organizations, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, participating in clinical trials may offer access to cutting-edge therapies and contribute to research efforts. Genetic counseling may also be beneficial, especially given the familial aspects of the condition.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
The documentation surrounding trilateral retinoblastoma is limited primarily due to its rarity, which restricts the scope of systematic clinical studies. As a condition that affects a small number of individuals, comprehensive data collection and characterization are challenging. Additionally, the complexity of its clinical features and the lack of identified genetic markers further contribute to the difficulties in establishing a robust clinical understanding.
To navigate the complexities of trilateral retinoblastoma, consider seeking a pediatric oncologist with experience in rare tumors or a specialist in hereditary cancer syndromes. While there are currently no identified patient organizations, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, participating in clinical trials may offer access to cutting-edge therapies and contribute to research efforts. Genetic counseling may also be beneficial, especially given the familial aspects of the condition.
There are several orphan drugs currently designated for trilateral retinoblastoma, including Episcleral Topotecan and genetically modified human adenovirus encoding human PH20, among others. These drugs are in various stages of development, aiming to improve treatment outcomes. Additionally, there is one active clinical trial related to this condition. For more information, you can explore ongoing studies at ClinicalTrials.gov: https://clinicaltrials.gov/search?cond=trilateral%20retinoblastoma.
Actionable guidance for navigating care for trilateral retinoblastoma
To navigate the complexities of trilateral retinoblastoma, consider seeking a pediatric oncologist with experience in rare tumors or a specialist in hereditary cancer syndromes. While there are currently no identified patient organizations, resources like the Genetic and Rare Diseases Information Center (GARD) at rarediseases.info.nih.gov can provide valuable information. Additionally, participating in clinical trials may offer access to cutting-edge therapies and contribute to research efforts. Genetic counseling may also be beneficial, especially given the familial aspects of the condition.
Consider asking your healthcare providers these condition-specific questions
Helpful links for rare disease information and support
Clinical profile data for this condition is not yet available. Phenotype information may still be loading below.
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Jan 30, 2026
Consider asking your healthcare providers these condition-specific questions
AI-Generated Content: This summary was generated using AI. Content has been fact-checked. Always consult with qualified healthcare providers for medical guidance.
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