National Haemoglobinopathy Registry – Steering Group
Dr Noémi Roy, Consultant Haematologist – Chair
I am a consultant haematologist at Oxford University Hospitals NHS Foundation Trust, an Honorary Senior Clinical Lecturer at the University of Oxford and the current Chair of the National Haemoglobinopathy Registry. I am the Rare Inherited Anaemia Lead on the National Haemoglobinopathy Panel. My main interests are haemoglobinopathies and rare inherited anaemias, and in particular the genetic investigation of inherited anaemias, including whole genome sequencing. I am dedicated to using patients’ views to guide how research in conducted in haematology and coordinating best practice care in red cell disorders at the European level. I lead quality of life studies in sickle cell disease as well as novel ways of improving compliance, patient understanding and patient pathways for high quality care.
Dr Nandini Sadasivam MRCPi, FRCP ( Edin) , FRCPath – Deputy Chair
Department of Haematology , Manchester Royal Infirmary.
I am a haematology Consultant at Manchester Foundation Trust University Hospitals and HCC lead for North of England thalassemia and Inherited Rare Anaemia. I am also the adult Thalassemia lead with National Haemoglobin Panel.
Some of my areas of interest include increasing clinical research portfolio in red cell disorders in the North West ( NW ) and overseeing the implementation of genomic medicine service in the NW for red cell disorders.
One of my goal with NHR is to ensure the interest of patients with sickle cell, thalassemia and Inherited Rare Anaemia from the North are represented on the NHR.
Kofi Anie
London North West University Healthcare NHS Trust and Imperial College London
I am the Psychology Service Lead for children and adults with sickle cell disease and thalassaemia at London North West University Healthcare NHS Trust, and Deputy Clinical Director of the West London Haemoglobinopathies Coordinating Centre. I have been involved in development of clinical standards of care for sickle cell disease and a collaborator on several international sickle cell disease projects and initiatives.
My current research interests in haemoglobinopathies include pain, quality of life, treatment adherence, and digital health and AI analytics in patient self-management. I believe my clinical and research experience will be valuable to improving patient care through the NHR.
Zoe Hamilton
Zoe Hamilton, National Programme of Care Manager for Blood & Infection, NHS England
Zoe is the lead commissioner for haemoglobinopathies at NHS England. Her role is to provide leadership and oversight of the development and delivery of a comprehensive work programme that achieves demonstrable improvements in the quality, equity, value and outcomes of commissioned specialised services. She works closely with other members of the Haemoglobinopathies Clinical Reference Group (CRG) to develop clinical commissioning policies, service specifications and quality standards. The CRG also provides advice on innovation, horizon scanning, service reviews and guides work to reduce variation and deliver increased value.
David Kafuko
Delivery Manager for Barts Health HCC
David is an HCC delivery manager for Barts health HCC based at the Royal London hospital. I am also the data manager for Barts health haemoglobinopathies. His goal is to ensure that all required data is promptly entered onto the NHR
Lesley McCarthy
Paediatric Haemoglobinopathy Nurse Specialist Oxford and Thames Valley
Lesley is the lead paediatric haemoglobinopathy nurse for Wessex and Thames Valley HCC and is also leading on their education strategy. She is a registered adult and paediatric nurse and has 30 years nursing experience both in the acute and community environments, now specialising in Haemoglobinopathies. Being a member of the NHR steering committee enables her to support the paediatric patients; focusing on paediatric standards and equity of care.
Kate Gardner
Consultant haematologist at Guy’s and St Thomas’ NHS Foundation Trust
Dr Kate Gardner is a consultant haematologist at Guy’s and St Thomas’ NHS Foundation Trust with a specialist interest in red cell disorders. She was awarded a PhD in 2017 during her Clinical Research Fellowship where she investigated the genetic basis of clinical variability in sickle cell disease. She has published both molecular research and clinical reviews in haemoglobinopathies.
Sanne Lugthart
Dr Sanne Lugthart MD, PhD
University Hospitals of Bristol and Weston NHS Foundation Trust
Sanne Lugthart is a consultant haematologist working as Haemoglobinopathy Coordinator Centre lead for South-West England. Sanne works at the University of Hospitals of Bristol and Weston and leads the haemoglobinopathy service since 2018.
Sanne is the principal investigator of several phase 2/3 clinical trials in sickle cell disease. She is a member of the Haemoglobinopathy Clinical Reference Group. Since 2021, she leads the national sickle pain group, which meet several times a year to share best practice, perform audits and develop research projects.
Sanne trained in The Netherlands and has worked with Sickle cell patients in the Erasmus MC, Rotterdam. Beside haemoglobinopathy, Sanne is specialised in lymphoma and acute leukaemia. She is a member of the National CAR-T Cell Panel and treats high-risk lymphoma patients. Sanne has completed a PhD in acute myeloid leukaemia and worked in various major centres; St Jude Children’s Research Hospital, TN; Cornell Medical College, NY; Ulm University, Germany.
Brigit Greystoke
Brigit Greystoke is a consultant haematologist in Newcastle upon Tyne and clinical lead for the North East England Specialist Haemoglobinopathy Team. She has a long standing interest in rare diseases and is particularly interested in how people manage their illnesses without a local support network. She joined the NHR committee to make sure that patients who live a long way from major haematology centres can get the best treatment for their conditions.
Tim Smith
Tim is an operational manager for the Haematology Department at King’s College Hospital in London and, with David Kafuko, co-ordinates the Data Managers’ subcommittee of the NHR. The data mangers enter the majority of data into the NHR, ensuring it is complete and accurate and able to drive improvements in patients’ care and quality of life. The subcommittee strives to improve processes to make this work more efficient and effective. Tim previously spent 20 years in IT management for a global bank and prior to that, the conservation of medieval wall paintings.
Sally Cavanagh
Clinical Information Manager – National Specialised Commissioning Business Intelligence and Informatics Team, NHS England and NHS Improvement
Sally is a member of the National Haemoglobinopathy Registry Steering Group, representing NHS England as part of her role working with clinical registries linked with a specialised service.
She worked in self-management of long-term conditions for over a decade before moving into the arena of health information and analysis, as the Evidence Manager for the Independent Review of Children’s Cardiac Services. She took up the role of Clinical Information Manager NHS England’s Specialised Commissioning Directorate in 2018.
She is passionate about ensuring that data works for and in the service of patients. Guiding and supporting the complete ‘renovation’ of the National Haemoglobinopathy Registry to do this significantly more effectively has been the most rewarding part of her current role.
Moksud Miah
HCC Manager based at University College London Hospital Trust
Moksud is the Red Cell Network HCC Data Manager for North Central London and East Anglia.
Denise Davis
Rob Hollingsworth – MDSAS
Dr Rob Hollingsworth is the managing director of MDSAS. He has an MSc and PhD in Health Informatics, is a Chartered Information Technology Professional (CITP), Chartered Software Engineer (CEng) and Member of the British Computer Society (MBCS), sitting on its Health Informatics Committee. He has over twenty-five years experience of delivering large-scale national and international healthcare IT projects.
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