June 9, 2025: New profile added from Iceland

ICEBIO is an Icelandic nationwide database on patients treated with biologic disease-modifying antirheumatic drugs (DMARDs) due to inflammatory joint diseases; including RA (rheumatoid arthritis), AS (ankylosing spondylitis), and PsA (psoriatic arthritis). The database is based on the Danish Registry for Biologic Therapies in Rheumatology, DANBIO. ICEBIO started collecting data in 2007 and contains comprehensive patient characteristics, along with disease activity scores and information on treatment.

ICEBIO (Iceland) **

Database Contact Data

Bjorn Gudbjornsson
Centre for Rheumatology Research (ICEBIO)
Landspitali University Hospital and Faculty of Medicine University of Iceland,
Reykjavik
ICELAND
Email: bjorngu@landspitali.is

Alternate Contact

N/A

References of Studies Using/Describing Database

1. Palsson O, Love TJ, Wallman JK, Kapetanovic MC, Gunnarsson PS, Gudbjornsson B. Prescription of non-steroidal anti-inflammatory drugs for patients with inflammatory arthritis decreases with the initiation of tumour necrosis factor inhibitor therapy: results from the ICEBIO registry. Scand J Rheumatol. 2024 Nov;53(6):402-408.

2. Ørnbjerg LM, Brahe CH, Linde L, Jacobsson L, Nissen MJ, Kristianslund EK, Santos MJ, Nordström D, Rotar Z, Gudbjornsson B, Onen F, Codreanu C, Lindström U, Möller B, Kvien TK, Barcelos A, Eklund KK, Tomšič M, Love TJ, Can G, Ionescu R, Loft AG, Mann H, Pavelka K, van de Sande M, van der Horst-Bruinsma IE, Suarez MP, Sánchez-Piedra C, Macfarlane GJ, Iannone F, Michelsen B, Hyldstrup LH, Krogh NS, Østergaard M, Hetland ML. Drug effectiveness of 2nd and 3rd TNF inhibitors in psoriatic arthritis - relationship with the reason for withdrawal from the previous treatment. Joint Bone Spine. 2024 Jul;91(4):105729.

3. Linde L, Ørnbjerg LM, Heegaard Brahe C, Wallman JK, Di Giuseppe D, Závada J, Castrejon I, Díaz-Gonzalez F, Rotar Z, Tomšič M, Glintborg B, Gudbjornsson B, Geirsson AJ, Michelsen B, Kristianslund EK, Santos MJ, Barcelos A, Nordström D, Eklund KK, Ciurea A, Nissen M, Akar S, Hejl Hyldstrup L, Krogh NS, Hetland ML, Østergaard M. Second and third TNF inhibitors in European patients with axial spondyloarthritis: effectiveness and impact of the reason for switching. Rheumatology (Oxford). 2024 Jul 1;63(7):1882-1892.

4. Ørnbjerg LM, Rugbjerg K, Georgiadis S, Rasmussen SH, Jacobsson L, Loft AG, Iannone F, Fagerli KM, Vencovsky J, Santos MJ, Möller B, Pombo-Suarez M, Rotar Z, Gudbjornsson B, Cefle A, Eklund K, Codreanu C, Jones G, van der Sande M, Wallman JK, Sebastiani M, Michelsen B, Závada J, Nissen MJ, Sanchez-Piedra C, Tomšič M, Love TJ, Relas H, Mogosan C, Hetland ML, Østergaard M. Patient-reported outcomes and PRO remission rates in 12,262 biologic-naïve patients with psoriatic arthritis treated with TNF-inhibitors in routine care. J Rheumatol. 2024 Jan 15:jrheum.2023-0764.

5. Glintborg B, Di Giuseppe D, Wallman JK, Nordström DC, Gudbjornsson B, Hetland ML, Askling J, Grondal G, Sokka T, Provan SA, Michelsen B, Kristianslund EK, Dreyer L, Love TJ, Lindström U. Uptake and effectiveness of newer biologic and targeted synthetic disease-modifying antirheumatic drugs in psoriatic arthritis: results from five Nordic biologics registries. Ann Rheum Dis. 2023 Jun;82(6):820-828.

6. Nissen M, Delcoigne B, Di Giuseppe D, Jacobsson L, Hetland ML, Ciurea A, Nekvindova L, Iannone F, Akkoc N, Sokka-Isler T, Fagerli KM, Santos MJ, Codreanu C, Pombo-Suarez M, Rotar Z, Gudbjornsson B, van der Horst-Bruinsma I, Loft AG, Möller B, Mann H, Conti F, Yildirim Cetin G, Relas H, Michelsen B, Avila Ribeiro P, Ionescu R, Sanchez-Piedra C, Tomsic M, Geirsson ÁJ, Askling J, Glintborg B, Lindström U. The impact of a csDMARD in combination with a TNF inhibitor on drug retention and clinical remission in axial spondyloarthritis. Rheumatology (Oxford). 2022 Nov 28;61(12):4741-4751.

7. Delcoigne B, Provan SA, Hammer HB, Di Giuseppe D, Frisell T, Glintborg B, Grondal G, Gudbjornsson B, Hetland ML, Michelsen B, Nordström D, Relas H, Askling J. Do patient-reported measures of disease activity in rheumatoid arthritis vary between countries? Results from a Nordic collaboration. Rheumatology (Oxford). 2022 Nov 2;61(11):4286-4296.

8. Di Giuseppe D, Lindström U, Aaltonen K, Relas H, Provan S, Gudbjornsson B, Hetland ML, Askling J, Kauppi M, Geirsson AJ, Chatzidionysiou K, Jørgensen TS, Dreyer L, Michelsen B, Jacobsson L, Glintborg B. The occurrence of multiple treatment switches in axial spondyloarthritis. Results from five Nordic rheumatology registries. Rheumatology (Oxford). 2022 Aug 30;61(9):3647-3656.

9. Michelsen B, Georgiadis S, Di Giuseppe D, Loft AG, Nissen MJ, Iannone F, Pombo-Suarez M, Mann H, Rotar Z, Eklund KK, Kvien TK, Santos MJ, Gudbjornsson B, Codreanu C, Yilmaz S, Wallman JK, Brahe CH, Möller B, Favalli EG, Sánchez-Piedra C, Nekvindova L, Tomsic M, Trokovic N, Kristianslund EK, Santos H, Löve TJ, Ionescu R, Pehlivan Y, Jones GT, van der Horst-Bruinsma I, Ørnbjerg LM, Østergaard M, Hetland ML. Real-World Six- and Twelve-Month Drug Retention, Remission, and Response Rates of Secukinumab in 2,017 Patients With Psoriatic Arthritis in Thirteen European Countries. Arthritis Care Res (Hoboken). 2022 Jul;74(7):1205-1218.

10. Glintborg B, Lindström U, Giuseppe DD, Provan SA, Gudbjornsson B, Hetland ML, Michelsen B, Wallman JK, Aaltonen K, Hokkanen AM, Nordström D, Jørgensen TS, Hansen RL, Geirsson AJ, Grøn KL, Krogh NS, Askling J, Kristensen LE, Jacobsson LTH; Danish Rheumatology Database (DANBIO), Anti-Rheumatic Therapy in Sweden/Swedish Rheumatology Quality (ARTIS/SRQ), Center for Rheumatology Research (ICEBIO), Finnish Register of Biological Treatment (ROB-FIN), and Norwegian Antirheumatic Drug Register (NOR-DMARD) registries. One-Year Treatment Outcomes of Secukinumab Versus Tumor Necrosis Factor Inhibitors in Spondyloarthritis: Results From Five Nordic Biologic Registries Including More Than 10,000 Treatment Courses. Arthritis Care Res (Hoboken). 2022 May;74(5):748-758. 

May 27, 2025: Information on the National Adult Cardiac Surgery Audit (NACSA) is now available

With data starting in 1977, NACSA is the primary database for collecting data on adult cardiac surgery in the United Kingdom, including information from NHS and private hospitals. This audit, part of the National Cardiac Audit Programme (NCAP), provides an overview of the state of cardiac surgery in the UK, including activity trends and quality measures.

National Adult Cardiac Surgery Audit (NACSA) (United Kingdom) **

Database Contact Data

National Institute for Cardiovascular Outcomes Research (NICOR),
St John’s House, 30 East Street,
Leicester, LE1 6NB
ENGLAND
Email 1: nicor.auditenquiries@nhs.net
Email 2: nicor.datarequests@nhs.net

Alternate Contact

N/A

References of Studies Using/Describing Database

1. Narayan P, Dong T, Chan J, Tan C, Aydin T, Sinha S, Fudulu DP, Angelini GD. Reoperative surgery for early and late-onset prosthetic valve endocarditis: temporal trends and outcomes. Interdisciplinary CardioVascular and Thoracic Surgery. 2025 Apr 11:ivaf096.

2. Sewart E, Isted A, Wong KHF, Kunst G, Mouton R. Prevalence of smoking and postoperative outcomes in people undergoing coronary artery bypass grafting: a UK registry analysis. Anaesthesia. 2025 Mar;80(3):330-332.

3. Sewart E, Isted A, Wong K, Whitaker D, Hinchliffe R, Kunst G, Mouton R. The Impact Of Smoking On Outcomes After Cardiac Surgery. Journal of Cardiothoracic and Vascular Anesthesia. 2024 Dec 1;38(12):76.

4. Gibbison B, Murphy G, O'Brien B, Pufulete M. An Update on Guidelines to Prevent and Manage Atrial Fibrillation After Cardiac Surgery and a Survey of Practice in the UK. J Cardiothorac Vasc Anesth. 2024 Oct;38(10):2307-2313.

5. Sinha S, Dong T, Dimagli A, Judge A, Angelini GD. A machine learning algorithm-based risk prediction score for in-hospital/30-day mortality after adult cardiac surgery. European Journal of Cardio-Thoracic Surgery. 2024 Oct;66(4):ezae368.

6. Aktaa S, Ali N, Ludman PF, Curzen N, Goodwin AT, Hildick-Smith D, Kharbanda RK, Jones PD, Manuel S, Phanthala S, Blackman DJ. Geographical Inequality in Access to Aortic Valve Intervention in England: A Report from the UK Transcatheter Aortic Valve Implantation Registry and National Adult Cardiac Surgery Audit. Interv Cardiol. 2024 Aug 28;19:e15.

7. Dimagli A, Gaudino M, Harik L, Sinha S, Fudulu D, Chan J, Olaria RP, Soletti Jr G, Alzghari T, Cancelli G, An KR. Comparative analysis of coronary artery bypass grafting outcomes in women using different conduits in the national UK data set. The Annals of Thoracic Surgery. 2024 Mar 1;117(3):510-6.

8. Chan J, Narayan P, Fudulu DP, Dong T, Angelini GD. Trend in mitral valve prostheses of choice and early outcomes in the United Kingdom. International Journal of Cardiology. 2024 Feb 15;397:131607.

9. Jenkins DA, Martin GP, Sperrin M, Brown B, Kimani L, Grant S, Peek N. Comparing Predictive Performance of Time Invariant and Time Variant Clinical Prediction Models in Cardiac Surgery. Stud Health Technol Inform. 2024 Jan 25;310:1026-1030.

10. Chan J, Sinha S, Fudulu DP, Dong T, Narayan P, Angelini GD. Training in Advanced Coronary Artery Bypass Surgery in the United Kingdom. Journal of Cardiac Surgery. 2024;2024(1):2140060.

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