Quality statement 2: Access to clinical trials

Quality statement

Children and young people (aged 0–24 years) with cancer should be offered the opportunity to take part in clinical trials if they are eligible.

Rationale

Involvement of children and young people with cancer in clinical trials has made an important contribution to improved childhood cancer survival rates. Multidisciplinary teams should identify suitable trials for children and young people, and key workers should provide support to the patient and their family in deciding whether to participate. The decision to participate should be an informed choice.

Quality measures

Structure

Evidence of local arrangements to ensure that children and young people (aged 0–24 years) are assessed for eligibility for relevant clinical trials and offered the opportunity to take part.

Data source: Local data collection.

Process

a) The proportion of children and young people (aged 0–24 years) with cancer and eligible for a clinical trial who are offered the opportunity to take part.

Numerator – the number of people in the denominator offered the opportunity to take part.

Denominator – children and young people (aged 0–24 years) with cancer and eligible for a clinical trial.

Data source: Local data collection.

b) The proportion of children and young people (aged 0–24 years) with cancer who are recruited into a clinical trial for which they are eligible.

Numerator – the number of people in the denominator recruited into the clinical trial.

Denominator – the number of children and young people (aged 0–24 years) with cancer and eligible for a clinical trial.

Data source: Local data collection.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers ensure that multidisciplinary teams discuss the eligibility of children and young people (aged 0–24 years) with cancer for relevant clinical trials and promote participation in research and development.

Healthcare professionals from the multidisciplinary teams identify relevant clinical trials for children and young people (aged 0–24 years) with cancer, assess eligibility and offer opportunities to take part.

Commissioners ensure that the cancer services they commission for children and young people (aged 0–24 years) identify relevant clinical trials and support participation.

What the quality statement means for patients, service users and carers

Children and young people with cancer are offered the opportunity to take part in clinical trials (which carry out research into new treatments) that have been identified as suitable for them and are supported to participate in these trials if they want to.

Source guidance

Equality and diversity considerations

When providing support for children and young people to access clinical trials any potential difficulties in participation, which may include distance, disability and financial barriers, should be taken into account.