06032019 Aim of the study group To improve awareness management and outcomes for patients with Haemochromatosis Arthropathy HA To produce materials for healthcare professionals emphasising the discriminatory features of ID: 775463
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EULAR Study Group:
Haemochromatosis arthropathy
06/03/2019
Aim of the study groupTo improve awareness, management and outcomes for patients with Haemochromatosis Arthropathy (HA)To produce materials for healthcare professionals emphasising the discriminatory features of HA to promote recognition and earlier diagnosisTo produce patient advice articles on aspects of HA including pain management and osteoporosisTo share clinical practice experience with colleagues To promote and design relevant clinical trials to improve pain management and slow disease progressionBackgroundGenetic Haemochromatosis is associated with a characteristic arthropathy resembling effectively 'accelerated osteoarthritis’ Fatigue and joint pain are the most prevalent symptoms at diagnosis.Patients often report in excess of 5 years from first attributable symptoms to diagnosis, and commencement of de-ironing.Affected people develop the clinical characteristics of osteoarthritis (OA) in the absence of predisposing trauma, at an earlier than expected age (often less than 60 years), involving typical OA joints (hips, knees, PIP, DIP, 1st CMC) and unusual OA joints - especially 2nd and 3rd MCPs and ankles. Radiologically there are abundant OA features including osteophytes (termed 'hook like' at the MCPs), early joint space narrowing, often chondrocalcinosis, and on MRI an excess of bone marrow lesions/subchondral cysts compared to controls.
Key unmet needsEarlier detection of patients with Genetic HaemochromatosisUnderstanding the aethiopathogenic link between HFE mutations, arthropathy and iron overload Developing classification criteria for Haemochromatosis Arthropathy, to permit standardized patient selection for clinical trialsEffective disease modifying therapies and better pain management for the ArthropathyWho we areOur group is made up of rheumatologists with an interest in Haemochromatosis Arthropathy, with members from Australia, Austria, Hungary, France, Germany, Ireland, UK and USA.New members are welcome
C
ontact
:
Dr.
med.
Stephanie Finzel,
stephanie.finzel@uniklinik-freiburg.de
Rheumatologist, University of Freiburg, Germany