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The primary goal of clinical trial research is not only developing better, more effective treatments – it’s ensuring that these treatments align with patients. ALLG has a patient centred philosophy that prioritises patient voice and lived experience through our Consumer Representative Panel (CRP). This partnership between patients and researchers ensures that our ALLG trials address patients’ needs while delivering better treatments, better lives. We incorporate feedback from our CRP into every stage of our clinical trial designs to evolve treatments that improve the lives of blood cancer patients.

Quality of Life & Capturing Data

Clinical trials not only focus on measuring treatment outcomes – they are also about understanding how treatments affect patients’ daily lives. While lab results and clinical endpoints are crucial to advancing new treatments, they can’t tell the full story of how a new treatment impacts patients. That is why quality of life is an integral part of all ALLG clinical trials. Patient reported outcome (PRO) measures are used to assess how the new treatment impacts daily life, mental health and overall well-being of trial participants.

By including PROs in all trial designs, we can measure the impacts on quality of life for patients receiving the new treatment. The inclusion of these outcomes ensure that the final treatment results consider both the therapy’s effectiveness and impact on overall quality of life for patients.

The Role of our Safety Data & Monitoring Committee

Clinical trials are closely monitored to ensure patient safety and the quality of the trial data. ALLG’s Safety and Data Monitoring Committee (SDMC) are an independent advisory body to our Scientific Advisory Committee (SAC), playing a vital role in safeguarding patient welfare.

The SDMC committee reviews the conduct of all active trials, assesses protocols amendments, and oversees every aspect related to patient safety and data quality. Their role is essential, with the authority to halt or modify trials if any safety concerns arise. Their dedicated, independent oversight enhances our clinical trials’ scientific rigour and strengthens confidence in ALLG’s world-class research and participant protection.

The Importance of the Consumer Representative Panel

ALLG’s Consumer Representative Panel plays a crucial role in ensuring clinical trials address the needs of patients. This panel is composed of people with lived experience of blood cancer, who provide direct feedback to researchers on trial design, treatment protocols and patient-related outcome measures. Their involvement is invaluable to assist researchers in developing treatment protocols and research with patients’ best interests in mind. This collaborative approach ensures that the end result is a clinical trial that is both scientifically impactful and incorporates patient needs.

Advancing Treatments Through Patients Voice

Patient-centred research is vital to conducting high-quality clinical trial research. ALLG has a patient-centric focus at every stage, from early trial design to trial conduct. Since 1973, ALLG has delivered over 180 investigator-initiated clinical trials that have enabled more than 15,000 patients across Australasia to access cutting-edge treatments.

Our Consumer Representative Panel and our Safety and Data Monitoring Committee play a vital role in this work. By placing a strong emphasis on measures important to patients, such as quality of life, we are continuously improving how ALLG trials are designed and delivered as we aim for Better treatments…Better lives.

Every approved treatment today started with a clinical trial. This Blood Cancer Awareness Month, Be Part of the Breakthrough and help support our clinical trial research.