Fiona Pearce

Clinical Associate Professor, University of Nottingham

Fiona leads the RECORDER collaboration with the Rare Disease Team at the National Disease Registration Service. She is an NIHR Advanced Fellow, and Clinical Associate Professor in Rheumatology Epidemiology at the University of Nottingham. She holds an honorary consultant Rheumatologist position at Nottingham University Hospitals NHS Trust.

Fiona’s research interests are centred around rare diseases, particularly rare autoimmune rheumatic diseases, such as vasculitis. She is interested in developing ways to conduct research in rare diseases using whole population approaches.

Fiona currently leads projects in rare autoimmune rheumatic diseases 1) assessing the effects of COVID-19 and 2) describing national epidemiology.

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Peter Lanyon

Rare Diseases Clinical Lead, National Disease Registration Service

Consultant Rheumatologist, Nottingham University Hospitals NHS Trust

Honorary Professor, University of Nottingham

Peter is the Rare Diseases Clinical Lead, National Disease Registration Service (NHS England), a service to support clinicians, patients, service delivery, commissioning, and public health.

Peter's research uses population datasets to study rare disease occurrence and outcomes, including pre-diagnosis clinical features, in primary and secondary care. His expertise is in translating research evidence into design and implementation of rare disease healthcare policy.

As National Clinical Co-Lead for Rheumatology, Getting It Right First Time (GIRFT, NHS England), Peter uses national healthcare data to reduce variation and improve outcomes across England.

He works closely with patient organisations as Co-Chair, Rare Autoimmune Rheumatic Disease Alliance (RAIRDA).

Peter on ResearchGatePeter's ORC-ID

Matthew Grange

Clinical Associate Professor, University of Nottingham

Matthew's research uses electronic health data for advancing knowledge in disease epidemiology, particularly in the areas of haematology, rheumatology and oncology. This includes exploring which specific groups of people develop venous thromboembolism and when they are most at risk using the Clinical Practice Research Datalink. Matthew is also interested in the statistical aspects of clinical trials and systematic reviews/meta-analyses and is a member of the Cochrane Diagnostic Test Accuracy editorial team.  His teaching activities include delivering an Evidence Based Medicine module to Undergraduate medical students and teaching data management using R on our Master of Public Health degree.

 

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Jeanette Aston

Project Manager, Rare Diseases, National Disease Registration Service (NDRS)

Jeanette has worked for the National Disease Registration Service Rare Diseases team since 2016.  She assists collaborations (such as RECORDER), with resources and guidance to carry out their work in partnership with the NDRS rare diseases team.

 

Tina Patel

Research Coordinator, University of Nottingham

Tina provides administrative support to the RECORDER team. She has worked in higher education supporting teaching or research since 2012.

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Alice Muir

Research Nurse, University of Nottingham

Alice (BN MA) has thirty years’ experience of clinical nursing in a range of medical specialties. This includes 20 years as a Nurse Specialist in Rheumatology at Nottingham University Hospitals NHS Trust where she cared for people living with autoimmune and rheumatic disease as well as conducting research. She continues to hold an honorary contract with Nottingham University Hospitals NHS Trust.

In addition to her interest in supporting research to improve conventional medical treatment for people living with rare autoimmune rheumatic disease like vasculitis, lupus, and scleroderma, Alice is passionate about working in partnership with patients to find strategies to promote well-being and help people with long term health problems understand, cope with, and manage their illness and symptoms.

In 2017 Alice was awarded the Nursing Times HRH Prince of Wales award for integrated approaches to care for her work on Setting up Tai Chi classes to help people cope with long term health issues.

Adam Taylor

Data Scientist, University of Nottingham

Adam is a Data Scientist within the Digital Research Service at the University of Nottingham. Adam has a background in data science, software engineering and machine learning, focusing on providing analytical solutions for researchers working with health data.

Adam studied his MEng at University of Sheffield, investigating the automated detection of abnormalities in capsule endoscopy. After working in industry on image analytics applications he then took up a position at the Digital Research service in Nottingham in 2020.

 

Digital Research Service

Stephanie Lax

Post-Doctorate Research Fellow, University of Nottingham

Stephanie is a Research Fellow appointed to support the RECORDER collaboration. 

In previous roles, she has delivered ambitious Cochrane reviews addressing key priorities for eczema patients and health professionals involved with their care, contributed to the development of software for estimating prevalence of haematological malignancies from incomplete longitudinal data, and explored novel computational methods for analysing multi-colour flow cytometry data.

Stephanie is passionate about involvement and engagement with patients and the public. She was involved in the Dragon In My Skin project to improve lay eczema knowledge and promote self-care, collaborating with a professional orchestra and a knowledge mobilisation expert. Furthermore, she facilitated an exploration of the public voice on skin of colour in dermatology.

In addition to RECORDER, and as a mother of two, she represents maternity service-users on PANDA (Primary prevention of maternal ANaemia to avoid preterm delivery and other Adverse outcomes).

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Anthony Chen

PhD Student, University of Nottingham

Tony is a PhD student at the University of Nottingham. He is currently studying on the project "Scleroderma and Systemic Lupus Erythematosus".

Tony has studied his MSc in Population Health at University College London (UCL) and BSc at Middlesex University London. His research interests include the associations of air pollution with dementia, the impact of older age adiposity on incident diabetes in the older Chinese population, and sleep patterns on all-cause mortality in the elderly population.

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Reza Omidvar

Data Scientist, University of Nottingham

Reza, currently serving as a Data Scientist and Machine Learning Engineer at the Digital Research Service, University of Nottingham, brings a wealth of expertise in designing and implementing machine learning models across a broad spectrum of projects.

With a foundation in Mechanical Engineering from Sharif University of Technology, Reza pursued his second M.Sc in Data Science at the University of Nottingham. Drawing from years of energy industry experience as a project engineer/lead, he transitioned to the role of Data Scientist at the University of Nottingham's Digital Research Service in 2023.

Vivien Lowndes

PPIE representative

Vivien Lowndes has suffered from the autoimmune rheumatic disease, eosinophilic granulomatosis with polyangiitis (EGPA) since 2013. During that time, she has been involved with a dozen different specialties, gaining a wealth of patient experience. Vivien has contributed to research projects on rare rheumatic diseases as both a research participant and a patient adviser, commenting on research instruments and the communication of findings. As well as her patient perspective, Vivien brings to this work her professional research experience. Using qualitative methods, her research focuses on citizen engagement in public services and the role of institutions in public policy. Vivien is Professor Emerita (Public Policy) at the University of Birmingham. She is a former Pro Vice Chancellor for Research and Chair of the Politics Panel for the Research Excellence Framework (REF).

Mary Bythell

Rare Diseases Lead, National Disease Registration Service (NDRS)

Mary has worked for the National Disease Registration Service (NDRS) since 2017. In her role, she led the programme of work aimed at expanding national disease registration for England to include non-cancer, non-congenital anomaly rare diseases. In her role as NDRS Rare Disease Lead, she uses her many years of experience working in disease registration to facilitate collaborations like RECORDER.

 

Mary on ResearchGate

Megan Rutter

Clinical Research Fellow, University of Nottingham

Megan is a dual Rheumatology and General Internal Medicine specialist registrar (ST6) who is currently out of programme doing a PhD at the University of Nottingham. Her research interest is rare autoimmune rheumatic diseases and Covid-19 and in 2021 she was awarded a Versus Arthritis Clinical Research Fellowship to fund her research. She has also received grant funding from the British Society of Rheumatology and Vasculitis UK.

 

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Myron Odingo

Post-Doctorate Research Fellow, University of Nottingham

Myron has a background in Pharmacy and holds a PhD in pharmacoepidemiology. He has a strong interest in using real world data and data science methods to research rare diseases. He is currently conducting research on Kawasaki disease, and ANCA associated vasculitis.

Jen Hannah

PhD student, King’s College, London

Specialist Registrar, King's College Hospital NHS Foundation Trust · Department of Rheumatology

 

Hannah on ResearchGate