Collaborative guidelines promotes optimal care for all children, families and survivors.
Globally, the retinoblastoma research community cannot agree on how to best manage this complex eye cancer. As a result, many children and adult survivors receive sub-optimal care. We support the development and use of evidence-based best practice guidelines to encourage common standards of care and drive valuable research forward.
Advances in retinoblastoma care in developed countries over the last half century have increased survival, improved visual outcomes and reduced healthcare costs. However, there remains no agreement on the best approaches to screening, referral, staging, treatment, genetic counseling and testing, follow-up and supportive care.
Without clearly defined standards of care, many children and adult survivors receive sub-optimal care. Families are confused by the array of treatment options and overwhelmed by the decisions they have to make. Survivors at high risk of second primary cancers feel unsupported and demoralized by the lack of structured ongoing care.
