This page applies if you are taking part in a clinical trial sponsored by Cancer Research UK. It explains how your personal and health information is used during and after the trial.
We will ask you for the following details:
Full name (collected, and held in identifiable format by the clinical trial site only, not by Cancer Research UK)
Date of birth
Gender
NHS number (or equivalent)
Contact details (address, phone number, email) (collected, and held in identifiable format by the clinical trial site only, not by Cancer Research UK)
Participant ID or trial code
Medical history and current health status
Diagnoses and treatment records
Medication usage and adherence
Laboratory test results (e.g. blood tests, imaging)
Vital signs (e.g. blood pressure, heart rate)
Adverse events and side effects
Hospitalisation records
Results from physical examinations
Genetic and Biometric Data (if applicable to the study – e.g. DNA or RNA samples or Genetic sequencing data)
Lifestyle and Behavioural Data (e.g. Smoking, alcohol, and drug use, diet and exercise habits)
Demographic and Socioeconomic Data (collected, and held in identifiable format by the clinical trial site only, not by Cancer Research UK)
Signed informed consent forms (collected, and held in identifiable format by the clinical trial site only, not by Cancer Research UK)
We collect this information from data you have provided directly when you fill out consent forms and complete questionnaires during your study visits. Your healthcare providers, such as your GP or hospital team, may also share relevant parts of your medical records with us, but only with your permission and in accordance with data protection laws. Trial site staff collect clinical data during your visits, including physical exams, test results, and observations made by doctors or nurses.
We use your personal data for many important purposes throughout the clinical trial to make sure the study is carried out safely, ethically, and in line with legal and regulatory requirements. First, we use your information to determine whether you’re eligible to take part in the trial, based on specific medical and personal criteria. If you’re eligible and choose to participate, we enrol you in the study and assign you a unique participant ID to help protect your identity. We then use your data to manage your involvement in the trial, including scheduling your appointments, sending reminders, and keeping track of your progress. We also record your consent to take part, and any changes you make to that decision, such as withdrawing from the study. Throughout the trial, we monitor your health and safety closely. This includes checking for any side effects or adverse reactions to the treatment, reporting these to regulators, and making sure you receive appropriate medical care if needed. We collect data from your trial visits, lab tests, scans, and questionnaires to understand how the treatment affects you and other participants. This data is analysed to assess how effective and safe the treatment is. Your samples will be shared with research laboratories who are responsible for analysing samples for us. We use the results to prepare reports and submit findings to regulatory bodies such as the MHRA and EMA. To ensure the trial is being conducted properly, authorised monitors, auditors, and inspectors may review your data. This helps confirm that we’re following the trial protocol, Good Clinical Practice (GCP), and all relevant laws. We also keep detailed records to support the integrity of the study and to meet legal requirements. After the trial, we may publish the results in scientific journals, present them at conferences, or share them in public trial registries. These publications will never include your name or any information that could identify you, only anonymised data is used. Where you consent, your data may also be used in future ethically approved research projects. This could include long-term follow-up studies, storing samples for biobanking, or exploring new research questions. To protect your privacy, we use a process called pseudonymisation, which means replacing your name and other direct identifiers with a code. Your personal details, such as your name and NHS number, are stored separately and securely by the clinical trial site, Cancer Research UK will not have access to this data. Only authorised staff can access this information, and we take strict measures to keep it safe. More specific information will be provided to you in the Informed Consent Form, which you will be asked to review and sign during the clinical trial onboarding process. This form will include details specific to the trial you are participating in
