Clinical trial · Observational
Cognitive Functioning and Health Related Quality of Life in Retinoblastoma Survivors
Cognitive Functioning and Health Related Quality of Life in Retinoblastoma Survivors (8-35 Years): The Role of Cancer Treatment and Repeated Anesthesia
- Source
- ClinicalTrials.gov
- Retrieved
- Sep 8, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260908-000001
Summary
Brief summary (as posted)
A retrospective crosssectional observational study of the effects of oncological treatment and frequent general anesthesia on neuropsychological development, psychosocial functioning (in terms of anxiety, depression, peer relations, perceived cognitive functioning and potential trauma) and health related quality of life in children and young adults who were treated or screened for retinoblastoma.
Conditions
Conditions (3)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| Health-Related Behavior | — | UNRESOLVED | — |
| Neurocognitive Dysfunction | — | UNRESOLVED | — |
| Retinoblastoma | Retinoblastoma | ONTOLOGY_EXACT | 0.98 |
Interventions
Interventions (3)
| Intervention | Type | Mapped drug | Match |
|---|---|---|---|
| Neuropsychological assesment | Diagnostic Test | — | UNRESOLVED |
| Parental psychosocial functioning (questionnaires) | Diagnostic Test | — | UNRESOLVED |
| Psychosocial functioning and quality of life (questionnaires) | Diagnostic Test | — | UNRESOLVED |
Design
Arms and outcomes
Arms (3)
- label
- Retinoblastoma Survivors
- description
- Children and adults who survived retinoblastoma (8-35 years of age)
- interventionNames
- Diagnostic Test: Neuropsychological assesment
- Diagnostic Test: Psychosocial functioning and quality of life (questionnaires)
- label
- Retinoblastoma Risk Carriers
- description
- Children and adults who (might) carry a genetic risk to develop retinoblastoma (8-35 years of age)
- interventionNames
- Diagnostic Test: Neuropsychological assesment
- Diagnostic Test: Psychosocial functioning and quality of life (questionnaires)
- label
- Parents
- description
- Parents of Rb patients, Rb survivors, or Rb risk carriers (6 months-12 years of age)
- interventionNames
Eligibility
Eligibility (as posted)
- Sex
- All
- Minimum age
- 6 Months
- Maximum age
- 35 Years
Show eligibility criteria text
Inclusion Criteria Rb survivors and Rb risk carriers (age 8-35 years): * Rb diagnosis, (main) treatment and follow-up of Rb patients and -survivors, or Rb screening took place at the Dutch Retinoblastoma Expertise Center of the Amsterdam University Medical Center, * Rb survivor or former Rb risk carriers is between 8 and 35 years old, * Average understanding of the Dutch language. Inclusion Criteria parents of Rb patients, Rb survivors or Rb risk carriers (6 months - 12 years): * Being a caregiver of a Rb survivor or Rb risk carrier that have been diagnosed and receive(d) (main) treatment and follow-up or screening at the Dutch Retinoblastoma Expertise Center of the Amsterdam University Medical Center, * The related Rb survivor or Rb risk carrier is \< 12 years old, * Average understanding of the Dutch language. Exclusion Criteria: * Pre-existing documented developmental delay and/or severe cognitive impairments (IQ \<70), * Having an active, uncontrolled psychiatric illness, * Rb diagnostic trajectory, treatment and follow-up at another hospital or before the founding of the Dutch Retinoblastoma Expertise Center in 1991. With exception of Rb survivors (diagnosed \>1991) who apart from treatment at the Dutch Retinoblastoma Center also required specialized treatment (such as radiation) at another center: they are illegible for inclusion.
References
Publications (0)
Data not yet available