Alleviate will create an online, safe, platform to access pain data from across the UK. This will be a key resource for the national pain research communities.
Working with Health Data Research UK (HDR UK), the data platform will provide access to pain data for the research community. Creating this hub will enable researchers to tackle the challenges in understanding the complexity and unpredictability of pain and reveal new and improved treatments across diverse chronic and debilitating pain conditions.
The Alleviate Data Hub will:
- Standardise and curate a range of pain data including text, genetic and imaging data to create a that enables the discovery of pain-related data. This will enable researchers to analyse data and/or populations to answer research questions.
- Provide an opportunity to link pain datasets from routine health and non-health related investigations UK-wide
- Develop a robust UK-wide health data hub to enable long-term impact and persistence.
- Create an opportunity to securely analyse data in the scalable HIC Trusted Research Environment.
The APDP Data Hub provides a hybrid architecture where data partners can take part, depending on their current governance and consent processes.
Data controllers of each pain dataset will choose whether to send data to the Alleviate centralised hub or retain data at their local institution and act as a federated node based on data governance, size and complexity of the data and technical feasibility.
Alleviate’s five work packages which include:
- WP1 – Patient and Public Involvement and Engagement (PPIE)
- WP2 – Programme Management and Engagement
- WP3 – Data On-boarding (i.e adding data to the database)
- WP4 – Federation and Automation (i.e. how to combine data & automate data processes)
- WP5 – Next Generation Trusted Research Environment (TRE) and Infrastructure (i.e. how to combine data & automate data processes)
The APDP has four consortia areas including:
- Partnership for Assessment and Investigation of Neuropathic Pain: Studies Tracking Outcomes, Risks and Mechanisms (PAINSTORM)
- Consortium to Research Individual, Interpersonal & Social Influences in Pain (CRIISP).
- Consortium Against Pain InEquality (CAPE) – The impact of adverse childhood experiences on chronic pain and responses to treatment
- Advanced Discovery of Visceral Analgesics by Neuroimmune Targets And the Genetics of Extreme human phenotypes visceral pain consortium (ADVANTAGE)
The Alleviate Data Hub will provide a shared data resource for the four APDP consortia and more. More details of the project are available below.