Clinical trials systematically test treatments to help medical professionals provide the most effective therapies with minimum side effects.
This is usually done by comparing a standard treatment to a new therapy or a modified version of the standard therapy.
Retinoblastoma is rare. Many valuable centre-based clinical research studies are being conducted, but they involve very small groups of children and are therefore limited in their ability to effectively evaluate therapies.
Clinical trials are the gold standard of childhood cancer care, but they are often misunderstood by parents. This section explains clinical research within the context of retinoblastoma care.
When medical research involves patients, it is called a clinical trial or clinical research study.
Clinical trials are conducted in phases. Each phase has specific aims and objectives that help to answer the researchers’ questions or hypotheses.
Protocols are documents in which researchers identify all information required to assess the effectiveness or safety of the treatment being investigated.
Sponsors (who fund and oversee the trial) and investigators (clinicians who design and implement the trial) have joint responsibility for patient safety.
Country by country, the small number of children with retinoblastoma makes it difficult to conduct clinical trials to evaluate new treatments.
Making an educated, well-informed judgment on whether to participate is crucial, as it will determine what treatment your child will receive in the months to come.
Ask as many questions as necessary to help you clearly understand the clinical research study proposed for your child.
Ethnography is a type of qualitative research that helps us learn more about people’s personal experiences. It can help improve retinoblastoma care.