Retinoblastoma involving both eyes. This occurs in the majority of patients with the inherited variant. A minority of patient with bilateral retinoblastoma were found to have involvement of the pineal...
Comprehensive, easy-to-understand information about this condition
How we create this content →Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Jan 30, 2026
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Jan 30, 2026
The documentation surrounding bilateral retinoblastoma is limited primarily due to its rarity and the complexity of its clinical presentation. With fewer than 500 cases diagnosed annually in the United States, systematic clinical studies have been challenging. Additionally, the lack of identified genes and specific phenotypes further complicates comprehensive understanding and characterization.
To navigate your care effectively, seek a pediatric oncologist with specific experience in retinoblastoma. It may also be beneficial to consult with a genetic counselor, especially considering the hereditary nature of the condition. While there are currently no patient organizations identified for bilateral retinoblastoma, you can access resources through the National Organization for Rare Disorders (NORD) at rarediseases.org. Additionally, inquire about participation in clinical trials or natural history studies that may provide further insights into your condition.
There are several orphan drugs currently designated for the treatment of bilateral retinoblastoma, including Episcleral Topotecan and genetically modified human adenovirus encoding human PH20. Additionally, there are four active clinical trials investigating various treatment approaches. You can find more information about these trials at ClinicalTrials.gov by searching for 'bilateral retinoblastoma'. This ongoing research offers hope for improved treatment strategies in the future.
Actionable guidance for navigating care for bilateral retinoblastoma
To navigate your care effectively, seek a pediatric oncologist with specific experience in retinoblastoma. It may also be beneficial to consult with a genetic counselor, especially considering the hereditary nature of the condition. While there are currently no patient organizations identified for bilateral retinoblastoma, you can access resources through the National Organization for Rare Disorders (NORD) at rarediseases.org. Additionally, inquire about participation in clinical trials or natural history studies that may provide further insights into your 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.
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.