This trial studies health outcomes after treatment in patients with retinoblastoma. Gathering health information over time from patients and family members through vision assessments, samples of tissue and saliva, and questionnaires may help doctors learn more about what causes retinoblastoma, identify long-term health outcomes for patients with retinoblastoma, and find out which therapies may be the best for treating retinoblastoma
Eligibility
Sex
ALL
Min age
—
Max age
—
Healthy volunteers
Accepted
* Unilateral or bilateral intraocular retinoblastoma
* Diagnosis between the ages of 0 - 17.99 years
* Diagnosis on or after January 1, 2008
* No exclusions based on primary or secondary treatment modalities
* Retrospective group patients must be ≥ 6 months post end of treatment at study entry
* For those already at this timepoint, they are now eligible
* For those in treatment, or otherwise not yet at this timepoint, they are eligible once at they are ≥ 6 months post end of treatment
* Prospective group patients must not have begun treatment
* Patients with diminished capacity will not be enrolled.
* Language: Patients must be able to communicate in English, French, or Spanish
* Sibling Cohort: One sibling, not affected by retinoblastoma will be enrolled, preference for the sibling closest in age to the RB patient.
* Regulatory Requirements: All patients and/or their parents or legal guardians must sign a written informed consent. All institutional, FDA, and NCI requirements for human studies must be met.
Primary outcome measure(s)
Incidence of acute toxicity — Up to 1 year
Estimate malignant neoplasm (SMN) risk .Measured through medical record abstraction, — Up to 1 year
Assess visual outcomes measured via age appropriate visual acuity testing — Up to 1 year
Assess psycho-social outcomes utilizing questionnaires: BRIEF — Up to 2 years
Genes will be tested to examine the role they play in Retinoblastoma. This will be done via whole-exome sequencing and whole RB1 Gene examination. — Up to 1 year
Assess quality of life utilizing questionnaires: BRIEF — Up to 2 years
Assess quality of life utilizing questionnaires: CBCL — Up to 2 years
Assess quality of life utilizing questionnaires: Youth Self-Report — Up to 2 years
Assess quality of life utilizing questionnaires: Pediatric Quality of Life — Up to 2 years
Assess visual outcomes measured via parent report — Up to 1 year
Assess visual outcomes measured via vision questionnaires — Up to 1 year
Assess psycho-social outcomes utilizing questionnaires: BRIEF-P, — Up to 2 years
Assess psycho-social outcomes utilizing questionnaires: CBCL — Up to 2 years
Assess psycho-social outcomes utilizing questionnaires: Youth Self-Report — Up to 2 years
Assess psycho-social outcomes utilizing questionnaires: Pediatric Quality of Life — Up to 2 years
This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.
We use cookies to analyse site traffic and improve your experience. With your consent, we may also use cookies for advertising. You can change your choice at any time.