Ethics approval and consent to participate
Ethical approval for the RKD and UKIVAS components were granted by the Tallaght University Research Ethics Committee (ref 2019-08 List 29 (07)) and the NHS National Research Ethics Service (REC 10/H1102/77), respectively. All participants provided written informed consent.
Consent for publication
Availability of data and materials
Due to the rarity of ANCA-associated vasculitis, coupled with the identifiable nature of the data, raw data must remain confidential and cannot be freely shared. We would invite any potential research collaborations or data requests through the corresponding author on reasonable request.
The authors declare that they have no competing interests.
Dr Jennifer Scott is a Wellcome-HRB Irish Clinical Academic Training (ICAT) Fellow, and this work was performed within the Irish Clinical Academic Training (ICAT) Programme, supported by the Wellcome Trust and the Health Research Board (Grant Number 203930/B/16/Z), the Health Service Executive, National Doctors Training and Planning and the Health and Social Care, Research and Development Division, Northern Ireland. MAL received funding from Health Research Board / Irish Nephrology Society (MRCG-2016-12) and Science Foundation Ireland (13/RC/2106_P2 and 11/YI/B2093). ANG and EH received funding from the European Union’s Horizon 2020 research and innovation programme under the Marie Skłodowska-Curie grant agreement No. 813545. Funders were not involved in any part of study design, analysis or writing of the manuscript.
JS, ML, LZ and NB designed the studies, with assistance from JP, our patient representative. JvG and MvW provided the ultraviolet radiation data, specific to each individual’s date and location. EH prepared the UKIVAS data for analysis. JS performed all data analysis. AW, JW, CW, LA, JK and JN provided expertise on model development and oversaw all statistical analysis, including data interpretation. AN-G produced the maps of participant locations. AB and TW assisted in data collection. DO’S and LH oversaw the development of the Resource Description Framework (RDF) triplestore, which facilitated data linkage. All authors read and approved the final submitted manuscript.
The authors would like to thank all participants who are enrolled in the UKIVAS and Irish Rare Kidney Disease registries, without whom this research would not be possible. We also extend our sincere gratitude to all clinicians across the UK and Ireland who actively recruit AAV patients to these registries to enable ongoing research.
Members of the RKD consortium
Tallaght Hospital: Mark Little*, Peter Lavin**, Catherine Wall**, George Mellotte**, Jennifer Scott**, Ted Fitzgerald**, Hannah O’Keefe**, Rachel Dilworth**, Pamela O’Neill#, Vicki Carr#
St James’ Hospital: Niall Conlon*, Brenda Griffin*, Donal Sexton*, Caroline Kosgei#
Mater University Hospital: Yvonne O’Meara*, Eoghan White**, Stephen Mahony**
St Vincent’s University Hospital: Eamonn Molloy*, John Holian**
Galway University Hospital: Matt Griffin*, David Lappin**, Conor Judge**, Sarah Cormican**, Blathnaid O’Connell**, Michelle Clince**
Limerick University Hospital: Liam Casserly*
Cork University Hospital: Michael Clarkson*, Michelle O’Shaughnessy**, Alyssa Verrelli**, Sinead Stoeman**, Fergus Daly**, Laura Slattery**, Aisling Murphy#
Beaumont Hospital: Mark Little*, Declan De Freitas**, Peter Conlon**, Mark Denton**, Carol Treanor**, Colm Magee**, Conall O Seaghdha**, Paul O’Hara**, Susan McGrath**, Brona Moloney**, Dean Moore**, Dearbhla Kelly**, Mary McCarthy**, Tamara Wanigasekera**, Ayanfeoluwa Obilana**, Claire Kennedy**, Dervla Connaughton**, Mark Canney**, Limy Wong**, Sarah Moran**
*Principal Investigator; **Co-investigator; #Study Coordinator