Evidence and Insight Programmes
Independent real world insight and evidence to support better decision making.
Our Evidence Programmes are independent, multi-country, direct-to-community research initiatives conducted in collaboration with patient advocacy groups. They are designed to unlock hard-to-find real-world data and deepen understanding of rare, ultra-rare, and underserved diseases.
Designed for both patient communities and life-science partners seeking high-quality evidence and insights where traditional data sources fall short.
What are Evidence & Insight Programmes
Our Evidence and Insights Programmes are independent, multi-country, direct-to-community research initiatives designed and conducted in collaboration with multidisciplinary stakeholders, including patient advocacy groups. They are designed to unlock hard-to-find real-world data and deepen understanding of rare, ultra-rare and underserved diseases.
Developed in close collaboration with patient advocacy groups, key opinion leaders, health economists and healthcare professionals, each programme aims to capture comprehensive information on:
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The burden of illness associated with a specific disease
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The patient voice, including preferences and lived experiences
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Key outcomes, including clinical outcomes, health-related quality of life and patient-reported outcomes
At the heart of each programme lies the PIVOT methodology, a structured, patient-centred framework designed by DHT.health with input from patients and other stakeholders. This approach brings together expertise from health economics, real-world research, patient advocacy, clinical practice and policy.
PIVOT gathers information from a defined population, focusing on the impact, voice and outcomes associated with their condition, and integrates these elements together to generate meaningful and actionable insights.
This unified design makes the Evidence and Insights Programmes one of the most comprehensive methods for generating patient-reported datasets in rare, ultra-rare and underserved diseases.
Programme data are used by multiple stakeholders, including life-science companies and patient communities, to inform national health policy, support advocacy efforts, strengthen market access discussions and contribute to scientific and patient conferences.
Our Evidence and Insight Programmes
von Willebrand Disease "PIVOT-vWD"
Von Willebrand Disease (vWD) is a rare, inherited, and highly heterogeneous bleeding disorder that remains chronically under-researched, with substantial gaps in understanding its real-world impact on patients and caregivers. Despite its prevalence, the lived experience of people with vWD, spanning diagnostic delays, variation in treatment exposure, healthcare utilisation, quality-of-life burden, and unmet needs across vWD types, has not been comprehensively captured in traditional clinical datasets.
To address this evidence gap, DHT.health launched in collaboration with local patient advocacy groups the PIVOT-vWD Evidence and Insight Programme, a multi-country, community-based research initiative designed to generate robust, patient-reported real-world evidence. By combining clinical characteristics, healthcare resource use, burden-of-illness metrics, treatment satisfaction, and rich HRQoL and preference data, PIVOT-vWD provides a foundational evidence base to inform HEOR, market access, and future innovation, grounded directly in the voices of people living with vWD.
Additional Evidence & Insight Programmes
(Coming Soon)
New programmes are under development and will be announced as they progress.
Stay tuned for upcoming updates.
