WP2 aims to obtain consensus on a set of real-world AD focused outcomes across the spectrum of the patient journey from pre‐clinical to severe stages of the disease. The set of outcomes generated will be those of relevance to patients, carers, scientists, clinicians, regulators, HTA bodies, payers and policy makers.
Overall objective: Define and catalogue scales and consensus‐based methodologies for identifying AD outcomes from routinely collected data (WP2)
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- Identify the ‘universe’ of outcomes relevant to the analysis (including cognition, behaviour, mental health, quality of life, service delivery, cost, social acceptability, etc.). Outcomes will be classified according to stakeholder relevance (patient, carer, clinician, scientist, policy maker) and prioritised according to scientific, service delivery, and economic impacts
- Evaluate and determine what constitutes a meaningful delay in disease progression from clinical and economic perspectives and how this can be expressed using real-world Data, including the translation from clinical trial data to the real-world setting
- For markers of priority outcomes and delayed progression, evaluate what is known of the validity and reliability of existing measures, and identify gaps between data requirements and currently available data