Professor Mark Little

Summary

HEalth data LInkage for ClinicAL benefit is a training network comprising 17 academic and 9 non-academic/industry partners for early stage researchers in the field of Healthcare Data Linkage in the GDPR era. European researchers have made leading contributions to the large genomic, transcriptomic and clinical datasets from patients with chronic diseases. Advances in information science provide unprecedented opportunities for using these datasets to elucidate the complex biology of these disorders, its influence by environmental triggers, and to personalise their management. Exploitation of these opportunities is limited by a shortage of researchers with the required informatics skills and knowledge of requisite data protection principles. HELICAL addresses this unmet need by developing a trans-sectoral and interdisciplinary programme with training in analysis of large datasets, using autoimmune vasculitis as a paradigm, as comprehensive biological and clinical datasets are already available. The programme will be delivered through a partnership of Academic and Industry researchers with expertise in basic biomedical research, epidemiology, statistics, machine learning, health data governance and ethics. HELICAL exploits recent advances in data science to link research datasets with longitudinal healthcare records, based on the robust ethical foundation required for linkage studies using near-patient data, to address key experimental questions.

Funding Agency

EU

Programme

H2020 MSCA

Project Type

Innovative Training Network

Summary

We propose a new way of managing chronic diseases that brings the fields of medicine and data science together. We hypothesise that the interaction between individuals with the relapsing and remitting autoimmune kidney disease ANCA vasculitis, and their environment, can be detected and defined by observing the whole system in action and integrating a wide array of data sources. Collaboration with IBM will allow us to take advantage of recent advances in machine learning technology that allows iterative refinement of algorithms to generate a technology readiness level 3 proof of concept physician tool, to present analysis results in a clinically meaningful way. The ultimate goal of this approach is to define the signature of vasculitis relapse and use this to aid in planning and delivery of optimum immunosuppressive therapy at the level of the patient. To achieve this, we will use advanced data science methodologies and Bayesian statistical techniques to develop a data architecture that curates and combines from four sources: Fixed patient-level factors (HLA-DP phenotype, granular clinical dataset obtained at diagnosis), External medical influences (maintenance immunosuppression, antibiotic prescriptions, Hospital Inpatient Enquiry records), External environmental influences, linked to patient location through time (meteorological data streams, community pathogen patterns: readily available as online data streams) and Direct patient-derived data sources (location, patient-reported quality of life and accelerometer defined activity). We expect a 50% rate of relapse after 5 years in a cohort of patients derived from the Rare Kidney Disease registry; we shall describe for the first time the relapse prodrome and define in great detail the environmental influences linking to this event.

Funding Agency

HRB

Programme

MRCG-Irish Nephrology Society co-fund

Project Type

Project grant

Summary

This project is focused on development of a novel biomarker test in the diagnosis and monitoring of crescentic glomerulonephritis (CGN), a severe form of inflammatory kidney injury. This test relies upon identification of a single protein in the urine: soluble CD163. This is shed from activated macrophages, the predominant cell in glomerular crescents, which are in direct communication with the urinary space. Extensive experimental work in our laboratory has brought this biomarker to technology readiness level 3. This project will bring it to level 7, laying the foundation for a definitive trial.

Funding Agency

HRB

Programme

HRA

Project Type

Project grant

Summary

We aim to recruit, register and biobank all incident patients with systemic vasculitis in Ireland. Much effort is put into ensuring the first sample set is obtained before any treatment is given. Subsequent longitudinal sample sets are obtained over the next 5 years. This is being run in collaboration with the Tallaght Vasculitis and Allergy Group

Funding Agency

Meath Foundation

Programme

Edna O'Flynn award

Project Type

Biobank

Summary

The Tallaght Vasculitis and Allergy Group (TVA Group) aims to provide joined up, efficient and excellent care to patients with systemic vasculitic and allergic conditions by developing a strong multi-disciplinary alliance within Tallaght Hospital. By combining the academic strength of the members, the group also aims to maximise research funding credibility and to provide a mechanism for national and international research network engagement. The RKD biobank and registry is an established infrastructure which feeds into the academic arm of the TVA Group. It is co-chaired by Mark Little and Peter Lavin on behalf of the group. Its goal is to capture long-term longitudinal clinical data and high quality biological samples from patients with systemic vasculitic and allergic disorders, disease controls and healthy controls. Coordinated from Tallaght Hospital, it currently receives data and samples from five centres across Ireland and has been actively recruiting since September 2012. In this relatively short period of time it has become one of the most important bio-resources in this field globally. To maximise its potential we now wish to target a specific patient group for recruitment: those with very active disease who have not yet been treated with immune suppressing medication. These are very challenging to recruit as they can present at any time of day or night and need to be sampled very rapidly (usually less than one hour) - hence these type of patients are virtually absent from existing biobanks around the world, despite being the most valuable in studying the disease. By extending recruitment to the whole country using the current grant proposal, we believe we can recruit an additional 70 such patients, making the biobank unrivalled anywhere, and an invaluable resource for discovering new biomarkers and studying disease mechanisms in these rare diseases.

Funding Agency

Meath Foundation

Programme

Edna O'Flynn award