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February 2023

Rare Disease Day, 28 February 2023: 3.5 million people in the UK are affected by a rare condition - that's 1 in 17 people

Many rare conditions are lifelong and complex. As a result, people affected by rare conditions often need support and expertise from a wide range of healthcare professionals such as GPs, specialist hospital consultants, specialist nurses, physiotherapists, occupational therapists, speech and language therapists, and learning disability nurses. This can mean having multiple appointments across different settings and on different dates.

The Leeds Teaching Hospitals NHS Trust hosts one of the 18 national NIHR BioResource Centres, which is led by centre Director, Dr Sinisa Savic. The NIHR Leeds BioResource centre is committed to delivering research to transform the outcomes and lives of people with a range of rare and common diseases.

Dr Sinisa Savic said: "In Leeds, research is underway with patients who are involved in studies including rare diseases such as primary immunodeficiencies (PID), autoimmune vasculitis, giant cell arteritis (GCA) and cystic fibrosis, and more common conditions including inflammatory bowel disease and the immune-mediated inflammatory diseases.

"Through previous and current studies in Leeds, we have contributed to significant breakthroughs in the understanding of genetic causes of rare diseases such as PID and GCA. The advances in PID have directly led to improved patient outcomes, since we are able to offer targeted, individualised treatment options. This understanding is helping people with rare conditions to live longer, better quality lives, and has been key to national and international research taking place in this complex area."

Professor Ann Morgan, Professor of Rheumatology at the University of Leeds is taking forward a research project into vasculitis, including GCA, which are a group of rare diseases where repeated attacks of inflammation occur in the walls of blood vessels.

Professor Morgan said: "The project that I am leading aims to understand what causes different types of vasculitis. This is an important area of research as vasculitis can affect men, women and children of all ages. A key clinical challenge in caring for people with vasculitis is to balance how well the immune system is controlled to prevent complications, against over-suppression of the immune system which can lead to infections.

Analysing the data generated by this project will help us to understand more about the parts of the immune system altered in vasculitis and how these change with treatment. This improved understanding will help us find new treatments for vasculitis or allow us to use existing treatments in a different type of vasculitis."

People who are living with and without health conditions can volunteer for BioResource studies taking place at Leeds Teaching Hospitals NHS Trust. For more information, the team can be contacted on 0113 206 0476 or by email at

Find out more online:

December 2019

The British Society for Rheumatology guideline on diagnosis and treatment of giant cell arteritis.

  • Guidance for clinicians in the diagnosis and treatment of GCA, supported by evidence where possible.

The BSR clinical practice guidelines on giant cell arteritis: five years in the making by Sarah Mackie and Peter Lanyon:

Executive Summary:

Full version:

January 2019

Wellcome Trust Fellowship for Gary Reynolds

Gary Reynolds (Clinical Lecturer at Newcastle University and Specialty Trainee in Rheumatology at the Freeman Hospital) has been awarded a Wellcome Trust Clinical Research Career Development Fellowship for his project examining the role of multinucleated giant cells (MGCs) in GCA. MGCs develop in a range of inflammatory conditions but their functional role is unclear. In this proposal, he intends to apply single cell genomic techniques to understand the transcriptional landscape of GCA-affected temporal artery tissue and use this to validate an in vitro model of MGCs. The aim is to use this model to trial novel therapeutics to target macrophage dysfunction in GCA. The fellowship will last four years starting in mid-2019.

July 2018

Commissioning of Tocilizumab for Giant cell Arteritis in the NHS

The TARGET Partnership are proposing to establish a UK post-marketing surveillance registry to study the effectiveness, safety and prescribing habits of Tocilizumab for the treatment of giant cell arteritis in the UK National Health Service, nested within the existing structure of the UK GCA Consortium and UKIVAS studies. For more information, please get in touch (

March 2018

  • The University of Leeds is hosting a Roche-sponsored Breakfast Meeting to link with the launch of Roche’s launch of GCA research.
  • Professor John Stone, Professor Ann Morgan, Dr Sarah Mackie and Dr Mar Pujades-Rodriguez will all provide talks on the themes of GCA research and steroid toxicity

October 2017

  • Dr Sarah Mackie gave a talk about GCA at the Hospital Optometrists Annual Conference (Queens Hotel, Leeds).


Our Recent Publications


For a summary, please see the article by tctMD.


  • Baxter EW, Graham AE, Re NA, Carr IM, Robinson JI, Mackie SL, Morgan AW. (2019) Standardized protocols for differentiation of THP-1 cells to macrophages with distinct M (IFNy+LPS), M(IL-4) and M(IL-10) phenotypes.
  • Svasti-Salee CR, Mollan SP, Morgan AW, Quick V. (2019) Rapid visual recovery following intravenous tocilizumab in glucocorticoid resistant refractory giant cell arteritis. BMJ Case Reports.
  • Mebrahtu TF, Morgan AW, Keeley A, Baxter PD, Stewart PM, Pujades-Rodriguez M. (2019) Dose dependency of iatrogenic glucocorticoid excess and adrenal insufficiency and mortality: a cohort study in England. J Clin Endocrinol Metab
  • Wu J, Keeley A, Mallen C, Morgan AW, Pujades-Rodriguez M. (2019). Incidence of infections associated with oral glucocorticoid dose in people diagnosed with polymyalgia rheumatica or giant cell arteritis: a cohort study in England. CMAJ.
  • Flurey CA, Tugwell PS, Black RJ, Halls S, Page MJ, Robson JC, … Richards B. (2019). The OMERACT Emerging Leaders Program: The Good, the Bad and the Future. The Journal of rheumatology, doi: 10.3899/jrheum.181126
  • Robson JC, Jayne D, Merkel PA, Dawson J. (2019). Systemic vasculitis and patient-reported outcomes: how the assessment of patient preferences and perspectives could improve outcomes. Patient related outcome measures, 10, pp. 37-42. doi: 10.2147/PROM.S163601


  • Coath F, Gillbert K, Griffiths B, Hall F, Kay L, Lanyon P, … Dasgupta B. (2018). Giant cell arteritis: new concepts, treatments and the unmet need that remains. Rheumatology, doi: 10.1093/rheumatology/key326
  • Chandrasekar A, Hensor EMA, Mackie SL, Backhouse MR, Harris E, (2018). Preliminary concurrent validity of the Fitbit-Zip and ActiGraph activity monitors for measuring steps in people with polymyalgia rheumatica. Gait & Posture, pp. 339-345. PubMed
  • De Smit E, Lukowski SW, Anderson L, Senabouth A, Dauyey K, Song S, … Powell JE. (2018). Longitudinal expression profiling of CD4+ and CD8+ cells in patients with active to quiescent giant cell arteritis. BMC medical genomics, 11(1), pp. 61. doi: 10.1186/s12920-018-0376-4
  • González-Serna D, Carmona EG, Ortego-Centeno N, Simeón CP, Solans R, Hernández-Rodríguez J, … Márquez A. (2018). A TNFSF13B functional variant is not involved in systemic sclerosis and giant cell arteritis susceptibility. PloS one, 13(12), pp. e0209343. doi: 10.1371/journal.pone.0209343
  • Monti S, Águeda AF, Luqmani R. (2018). The use of ultrasound in the management of large-vessel vasculitis: an evolving concept. Clinical and experimental rheumatology, 36 Suppl 114(5), pp. 96-102.
  • Monti S, Floris A, Ponte CB, Schmidt WA, Diamantopoulos AP, Pereira C … Luqmani RA, (2018). The proposed role of ultrasound in the management of giant cell arteritis in routine clinical practice. Rheumatology (Oxford, England), 57 (1), pp. 112-119. PubMed
  • Monti S, Floris A, Ponte C, Schmidt WA, Diamantopoulos AP, Pereira C … Luqmani R, (2018). The use of ultrasound to assess giant cell arteritis: review of the current evidence and practical guide for the rheumatologist. Rheumatology (Oxford, England), 57 (2), pp. 227-235. PubMed
  • Ortiz-Fernández L, Carmona FD, López-Mejías R, González-Escribano MF, Lyons PA, Morgan AW … AAV Study group. , (2018). Cross-phenotype analysis of Immunochip data identifiesas a relevantfor the development of systemic vasculitis. Annals of the Rheumatic Diseases, 77 (4), pp. 589-595. PubMed
  • Pearce F, Lanyon PC, Watts RA, (2018). Can prediction models in primary care enable earlier diagnosis of rare rheumatic diseases? Rheumatology (Oxford, England). PubMed
  • Quick V, Bhatt H, Chan C. (2018). 149 All patients with possible giant cell arteritis should be seen by a rheumatologist before temporal artery biopsy. Rheumatology, (suppl_3), doi: 10.1093/rheumatology/key075.373
  • Quick V, Hughes M, Stavrou C, Brown G. (2018). 152 Reducing the need for temporal artery biopsy through a rheumatology-led fast trackultrasound service for giant cell arteritis. Rheumatology, (suppl_3), doi: 10.1093/rheumatology/key075.376
  • Robinson JI, Baxter EW, Owen RL, Thomsen M, Tomlinson DC, Waterhouse MP … Morgan AW, (2018). Affimer proteins inhibit immune complex binding to FcγRIIIa with high specificity through competitive and allosteric modes of action. Proceedings of the National Academy of Sciences of the United States of America, 115 (1), pp. E72-E81. PubMed
  • Slart RHJA, Writing group , Reviewer group , Members of EANM Cardiovascular , Members of EANM Infection & Inflammation , Members of Committees, … EANM Committee Coordinator. (2018). FDG-PET/CT(A) imaging in large vessel vasculitis and polymyalgia rheumatica: joint procedural recommendation of the EANM, SNMMI, and the PET Interest Group (PIG), and endorsed by the ASNC. European journal of nuclear medicine and molecular imaging, 45(7), pp. 1250-1269. doi: 10.1007/s00259-018-3973-8
  • Tiganescu A, Hupe M, Uchida Y, Mauro T, Elias PM, Holleran WM, (2018). Topical 11β-Hydroxysteroid Dehydrogenase Type 1 Inhibition Corrects Cutaneous Features of Systemic Glucocorticoid Excess in Female Mice. Endocrinology, 159 (1), pp. 547-556. PubMed
  • Vaidyanathan S, Chattopadhyay A, Mackie SL, Scarsbrook AF. (2018). Comparative effectiveness of F-FDG PET-CT and contrast-enhanced CT in the diagnosis of suspected large-vessel vasculitis. The British journal of radiology, 91(1089), pp. 20180247. doi: 10.1259/bjr.20180247


  • Black RJ, Goodman SM, Ruediger C, Lester S, Mackie SL, Hill CL, (2017). A Survey of Glucocorticoid Adverse Effects and Benefits in Rheumatic Diseases: The Patient Perspective. Journal of Clinical Rheumatology: Practical Reports on Rheumatic & Musculoskeletal Diseases, 23 (8), pp. 416-420. PubMed
  • Black RJ, Robson JC, Goodman SM, Hoon E, Lai LYH, Simon LS … Hill CL, (2017). A Patient-reported Outcome Measure for Effect of Glucocorticoid Therapy in Adults with Inflammatory Diseases Is Needed: Report from the OMERACT 2016 Special Interest Group. The Journal of Rheumatology, 44 (11), pp. 1754-1758. PubMed
  • Carmona F. David, Vaglio Augusto, Mackie Sarah L., Solans Roser, Beretta Lorenzo, Cid Maria C … Martin Javier, (2017).  A Genome-Wide Association Study Identifies Plasminogen And P4ha2 As Novel Susceptibility Genes For Giant Cell Arteritis. Rheumatology, 53 (3), pp30-55. PubMed
  • Halls S, Sinnathurai P, Hewlett S, Mackie SL, March L, Bartlett SJ … Orbai AM, (2017). Stiffness Is the Cardinal Symptom of Inflammatory Musculoskeletal Diseases, Yet Still Variably Measured: Report from the OMERACT 2016 Stiffness Special Interest Group. The Journal of Rheumatology, 44 (12), pp. 1904-1910. PubMed
  • Liddle J, Bartlam R, Mallen CD, Mackie SL, Prior JA, Helliwell T, Richardson JC, (2017). What is the impact of giant cell arteritis on patients’ lives? A UK qualitative study. BMJ Open, 7 (8), pp. e017073. PubMed
  • Mackie SL, Twohig H, Neill LM, Harrison E, Shea B, Black RJ … OMERACT PMR Working Group , (2017). The OMERACT Core Domain Set for Outcome Measures for Clinical Trials in Polymyalgia Rheumatica. The Journal of Rheumatology, 44 (10), pp. 1515-1521. PubMed
  • Mooney J, Watts RA, (2017). Educating people with rare rheumatological conditions. Rheumatology (Oxford, England), 56 (12), pp. 2042-2043. PubMed
  • Morishita KA, Moorthy LN, Lubieniecka JM, Twilt M, Yeung RSM, Toth MB … ARChiVe Investigators Network within the PedVas Initiative, (2017). Early Outcomes in Children With Antineutrophil Cytoplasmic Antibody-Associated Vasculitis. Arthritis & Rheumatology (Hoboken, N.J.), 69 (7), pp. 1470-1479. PubMed
  • Nikiphorou E, Mackie SL, Kirwan J, Boers M, Isaacs J, Morgan AW, Young A, (2017). Achieving consensus on minimum data items (including core outcome domains) for a longitudinal observational cohort study in rheumatoid arthritis. Rheumatology (Oxford, England), 56 (4), pp. 550-555. PubMed
  • Robson JC, Dawson J, Cronholm PF, Ashdown S, Easley E, Kellom KS … Merkel PA, (2017). Patient perceptions of glucocorticoids in anti-neutrophil cytoplasmic antibody-associated vasculitis. Rheumatology International, 38(4):675-682. PubMed
  • Seeliger B, Sznajd J, Robson JC, Judge A, Craven A, Grayson PC … Luqmani RA, (2017). Are the 1990 American College of Rheumatology vasculitis classification criteria still valid? Rheumatology (Oxford, England), 56 (7), pp. 1154-1161. PubMed
  • Smith SL, Plant D, Eyre S, Hyrich K, Morgan AW, Wilson AG … Barton A, (2017). The predictive value of serum S100A9 and response to etanercept is not confirmed in a large UK rheumatoid arthritis cohort. Rheumatology (Oxford, England), 56 (6), pp. 1019-1024. PubMed
  • Teare HJA, Hogg J, Kaye J, Luqmani R, Rush E, Turner A … Javaid MK, (2017). The RUDY study: using digital technologies to enable a research partnership. European Journal of Human Genetics: EJHG, 25 (7), pp. 816-822. PubMed
  • Twigg S, Hensor EMA, Emery P, Tennant A, Morgan AW, Yorkshire Early Arthritis Register Consortium, (2017). Patient-reported Outcomes as Predictors of Change in Disease Activity and Disability in Early Rheumatoid Arthritis: Results from the Yorkshire Early Arthritis Register. The Journal of Rheumatology, 44 (9), pp. 1331-1340. PubMed
  • Yates M, Watts R, Bajema I, Cid M, Crestani B, Hauser T … Mukhtyar C, (2017). Validation of the EULAR/ERA-EDTA recommendations for the management of ANCA-associated vasculitis by disease content experts. RMD Open, 3 (1), pp. e000449. PubMed


  • Smith SL, Plant D, Lee XH, Massey J, Hyrich K, Morgan AW, Wilson AG … Barton A. (2016). Previously reported PDE3A-SLCO1C1 genetic variant does not correlate with anti-TNF response in a large UK rheumatoid arthritis cohort. Pharmacogenomics, 17 (7), pp. 715-20. PubMed
  • Bissell LA, Hensor EM, Kozera L, Mackie SL, Burska AN, Nam JL … Morgan AW, (2016). Improvement in insulin resistance is greater when infliximab is added to methotrexate during intensive treatment of early rheumatoid arthritis-results from the IDEA study. Rheumatology (Oxford, England), 55 (12), pp. 2181-2190. PubMed


  • Mathews RJ, Robinson JI, Battellino M, Wong C, Taylor JC, Biologics in Rheumatoid Arthritis Genetics and Genomics Study Syndicate (BRAGGSS) … McDermott MF, (2014). Evidence of NLRP3-inflammasome activation in rheumatoid arthritis (RA); genetic variants within the NLRP3-inflammasome complex in relation to susceptibility to RA and response to anti-TNF treatment. Annals of the Rheumatic Diseases, 73 (6), pp. 1202-10. PubMed
  • Morgan MD, Al-Shaarawy N, Martin S, Robinson JI, Twigg S, YEAR Consortium … Morgan AW, (2014). MTHFR functional genetic variation and methotrexate treatment response in rheumatoid arthritis: a meta-analysis. Pharmacogenomics, 15 (4), pp. 467-75. PubMed


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