Co-Investigators: EUVAS Council: Ingeborg Bajema, MD, Mikkel Fauschou, MD, PhD, Thomas Hauser, MD, Peter Hoglund, MD, PhD, David Jayne, MD, Alfred Mahr, MD, MPH, PhD, Laura Moi, MD, Raashid Luqmani, DM FRCP, (E) and Kerstin Westman, MD

Title: Long Term Patient Follow-up of ANCA-associated Vasculitis, An International Inception Cohort Study by the European Vasculitis Society (EUVAS)

Award: $62,000 one-year

There is a paucity of information on the long term outcome of patients with ANCA associated vasculitis (AAV) and factors predictive for adverse outcomes. The European Vasculitis Society (EUVAS) has conducted nine randomized controlled trials in AAV recruiting over 900 patients from diagnosis between 1995 and 2010.
In 2007, EUVAS examined five-year follow-up of 500 patients and reported on mortality, malignancy, cardiovascular events, safety, relapse and renal outcomes. Up-to-date data on 85% of the original cohorts was obtained. This data has helped shape current attitudes to AAV but further study is now required to assess change with more recent studies and longer term follow-up of older studies. Exemplar topics relevant to current practice include the cancer risks associated with cyclophosphamide, the impact of relapse on damage accrual and health related quality of life.
There is limited data regarding long term outcomes in forms of ANCA-associated vasculitis and factors that prevent adverse outcomes. These researchers are developing a large database using the information collected as part of ANCA trials from 1995 to 2010. The team is examining factors such as survival, long term kidney function, co-morbidities, relapse status, vasculitis-related damage, drug exposure, mortality, cancer rates, cardiovascular events, drug safety, relapse rate and other kidney-related outcomes.
Dr. Laura Moi, a fellow supported by the grant and a member of the EUVAS Council, will manage the project.

EUVAS Council (l-r):Thomas Hauser, Kerstin Westman, Ingeborg Bajema,David Jayne, Alfred Mahr