Clinical Research Directory

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.