TURKBIO (Turkey) **

Database Contact Data

Fatoş Önen
Division of Rheumatology
Dokuz Eylül University School of Medicine
İzmir
TURKEY
Email: Fatos.onen@gmail.com

Alternate Contact

TÜRK ROMATOLOJİ VERİTABANI "TÜRKBİO"
Dokuz Eylül Üniversitesi Tıp Fakültesi Hastanesi
İç Hastalıkları Ana Bilim Dalı
Romatoloji Bilim Dalı
Balçova
İzmir
TURKEY
Phone: +90 2324123721 
Email: turkbio@zitelab.eu

References of Studies Using/Describing Database

1. Karakaş A, Gulle S, Can G, Dalkılıc E, Akar S, Koca SS, Pehlivan Y, Senel S, Tufan A, Ozturk MA, Yilmaz S, Yazici A, Cefle A, Yüce İnel T, Erez Y, Sari I, Birlik M, Direskeneli H, Akkoc N, Onen F. Does obesity affect treatment response to secukinumab and its survival in ankylosing spondylitis? Real-life data from the TURKBIO Registry. Mod Rheumatol. 2023 Jun 22:road061. doi: 10.1093/mr/road061. Epub ahead of print. 

2. azici A, Özdemir Işık Ö, Dalkılıç E, Koca SS, Pehlivan Y, Şenel S, Inanc N, Akar S, Yılmaz S, Soysal Gündüz Ö, Cefle A, Karakaş ÖF, Onen F. A national, multicenter, secondary data use study evaluating efficacy and retention of first-line biologic treatment with tocilizumab in patients with rheumatoid arthritis in real-life setting: results from TURKBIO registry. Sci Rep. 2022 Dec 20;12(1):21972. 

3. Önen F, Can G, Çapar S, Dalkılıç E, Pehlivan Y, Şenel S, Akar S, Koca SS, Tufan A, Yazıcı A, Yılmaz S, İnanç N, Sarı İ, Birlik M, Solmaz D, Cefle A, Öztürk MA, Yolbaş S, Krogh NS, Yılmaz N, Erten Ş, Bes C, Gündüz ÖS, Göker B, Haznedaroğlu S, Yavuz Ş, Yildirim Çetin G, Yıldız F, Direskeneli H, Akkoç N. A real-life analysis of patients with rheumatologic diseases on biological treatments: Data from TURKBIO Registry. Eur J Rheumatol. 2022 Apr;9(2):82-87.

4. Michelsen B, Lindström U, Codreanu C, Ciurea A, Zavada J, Loft AG, Pombo-Suarez M, Onen F, Kvien TK, Rotar Z, Santos MJ, Iannone F, Hokkanen AM, Gudbjornsson B, Askling J, Ionescu R, Nissen MJ, Pavelka K, Sanchez-Piedra C, Akar S, Sexton J, Tomsic M, Santos H, Sebastiani M, Österlund J, Geirsson AJ, Macfarlane G, van der Horst-Bruinsma I, Georgiadis S, Brahe CH, Ørnbjerg LM, Hetland ML, Østergaard M. Drug retention, inactive disease and response rates in 1860 patients with axial spondyloarthritis initiating secukinumab treatment: routine care data from 13 registries in the EuroSpA collaboration. RMD Open. 2020 Sep;6(3):e001280. 

5. Michelsen B, Ørnbjerg LM, Kvien TK, Pavelka K, Nissen MJ, Nordström D, Santos MJ, Koca SS, Askling J, Rotar Z, Gudbjornsson B, Codreanu C, Loft AG, Kristianslund EK, Mann HF, Ciurea A, Eklund KK, Vieira-Sousa E, Yazici A, Jacobsson L, Tomšič M, Löve TJ, Ionescu R, van der Horst-Bruinsma IE, Iannone F, Pombo-Suarez M, Jones GT, Hyldstrup LH, Krogh NS, Hetland ML, Østergaard M. Impact of discordance between patient's and evaluator's global assessment on treatment outcomes in 14 868 patients with spondyloarthritis. Rheumatology (Oxford). 2020 Sep 1;59(9):2455-2461.

6. Brahe CH, Ørnbjerg LM, Jacobsson L, Nissen MJ, Kristianslund EK, Mann H, Santos MJ, Reino JG, Nordström D, Rotar Z, Gudbjornsson B, Onen F, Codreanu C, Lindström U, Möller B, Kvien TK, Pavelka K, Barcelos A, Sánchez-Piedra C, Eklund KK, Tomšič M, Love TJ, Can G, Ionescu R, Loft AG, van der Horst-Bruinsma IE, Macfarlane GJ, Iannone F, Hyldstrup LH, Krogh NS, Østergaard M, Hetland ML. Retention and response rates in 14 261 PsA patients starting TNF inhibitor treatment-results from 12 countries in EuroSpA. Rheumatology (Oxford). 2020 Jul 1;59(7):1640-1650. 

7. Ørnbjerg LM, Brahe CH, Askling J, Ciurea A, Mann H, Onen F, Kristianslund EK, Nordström D, Santos MJ, Codreanu C, Gómez-Reino J, Rotar Z, Gudbjornsson B, Di Giuseppe D, Nissen MJ, Pavelka K, Birlik M, Kvien T, Eklund KK, Barcelos A, Ionescu R, Sanchez-Piedra C, Tomsic M, Geirsson ÁJ, Loft AG, van der Horst-Bruinsma I, Jones G, Iannone F, Hyldstrup L, Krogh NS, Hetland ML, Østergaard M. Treatment response and drug retention rates in 24 195 biologic-naïve patients with axial spondyloarthritis initiating TNFi treatment: routine care data from 12 registries in the EuroSpA collaboration. Ann Rheum Dis. 2019 Nov;78(11):1536-1544. 

8. Uslu S, Can G, Senel S, Dalkilic E, Inanc N, Akar S, Kocaer SB, Birlik M, Capar S, Akkoc N, Onen F. THU0218 The efficacy and drug survival of the biosimilar infliximab (CT-P13) compared to the original reference infliximab in inflammatory rheumatic diseases; results from the turkbio registry. Annals of the Rheumatic Diseases. 2018 Jun 1;77:329.

9. Zengin B, Inanç N, Akar S, et alAB0482 Similar efficacy of tofacitinib on disease activity in rheumatoid arthritis patients with and without previous biologicals; results from the turkbio registryAnnals of the Rheumatic Diseases 2018;77:1401-1402.

10. Inanc N, Ozen G, Yalcinkaya Y, et alFRI0134 Is there any difference in ra patients for methotrexate use vs. leflunomide use as a concomitant treatment with biological and targeted synthetic dmards in turkbio registry?Annals of the Rheumatic Diseases 2018;77:611-612.

Jul 25, 2023: We finally have the NCARDRS profile! (It includes information from 8 former individual congenital anomaly registries)

Launched April 1, 2015, the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) records information on people with congenital abnormalities and rare diseases across the whole of England. NCARDRS includes information from the following registries, which individually collected data in the past:

- Congenital Anomaly Register for Oxfordshire, Berkshire and Buckinghamshire (CAROBB)

Jul 29, 2023: We have just added a new profile from the Republic of Ireland

The National Cancer Registry of Ireland (NCRI) was established in 1991 and has been collecting comprehensive cancer information for the population of the Republic of Ireland since 1994. This information is used in research into the causes of cancer, in education and information programmes, and in the planning and management of cancer services to deliver the best cancer care to the whole population.

National Cancer Registry (NCRI) (Ireland)

Database Contact Data

National Cancer Registry Ireland
Building 6800 Cork Airport Business Park
Cork, T12CDF7
IRELAND
Phone: +353 (0) 21 4310814
Email: ncr_info@ncri.ie

Alternate Contact

National Cancer Registry Ireland
Building 6800 Cork Airport Business Park
Cork, T12CDF7
Phone: +353 (0) 21 4310814
Email via Contact Form: https://www.ncri.ie/contact

References of Studies Using/Describing Database

1. Keogh RJ, Barr MP, Keogh A, McMahon D, Baird AM, Cotter S, Breen D, Fitzmaurice GJ, Fitzpatrick D, O’Brien C, Finn SP. Lung Cancer in the Republic of Ireland. Journal of Thoracic Oncology. 2023 Jul 1;18(7):851-7.

2. Conlon E, Fitzgerald C, Hintze J, Elhassan EA, Sexton DJ, O'Leary E, O'Kelly P, O'Neill JO, Egan J, Houlihan DD, Murray D. High frequency and mortality of head and neck malignancy in organ transplant recipients in Ireland–A national cohort study. American Journal of Otolaryngology. 2023 Jul 1;44(4):103827.

3. Sexton GP, Walsh P, Moriarty F, Lennon P, O’Neill JP. Survival in an era of organ preservation: an update on laryngeal cancer in Ireland. European Archives of Oto-Rhino-Laryngology. 2023 Jun 16:1-9.

4. Crealey GE, Hackett C, Harkin K, Heckmann P, Kelleher F, Lyng Á, McCarthy T, McEnery M, Meaney C, Roche D, Tobin AM. Melanoma-related costs by disease stage and phase of management in Ireland. Journal of Public Health. 2023 May 11:fdac154.

5. Dundon NA, Al Ghazwi AH, Davey MG, Joyce WP. Rectal cancer surgery: does low volume imply worse outcome—a single surgeon experience. Irish Journal of Medical Science (1971-). 2023 May 8:1-7.

6. Killian M, Mahony DO, Murphy K, Connor DO, Bird B, Murphy CG. Breast cancer outcomes in a private hospital appear better than national outcomes in a country with a mixed public/private healthcare model. Irish Journal of Medical Science (1971-). 2023 Apr;192(2):527-31.

7. Chu RW, García AV, Hickey C, Power DG, Gorry C. Cost-Effectiveness of First-Line Pembrolizumab Monotherapy Versus Chemotherapy in High Programmed Death-Ligand 1 Advanced Non–Small Cell Lung Cancer in the Irish Healthcare Setting. Value in Health. 2023 Mar 1;26(3):402-10.

8. Cahir C, Bennett K, Dombrowski SU, Kelly CM, Wells M, Watson E, Sharp L. Informing interventions to improve uptake of adjuvant endocrine therapy in women with breast cancer: a theoretical-based examination of modifiable influences on non-adherence. Supportive Care in Cancer. 2023 Mar;31(3):200.

9. Sexton GP, Walsh P, Moriarty F, O’Neill JP. Age alone is not a barrier to concurrent chemoradiotherapy for advanced head and neck cancer. Annals of Otology, Rhinology & Laryngology. 2023 Mar;132(3):275-83.

10. Anderson S, Breen KJ, Davis NF, Deady S, Sweeney P. Penile cancer in Ireland–A national review. the surgeon. 2022 Jun 1;20(3):187-93.

Swedish Cystic Fibrosis Patient Registry (Sweden) **

Database Contact Data

For questions relating to research purposes, or when planning research projects to reconcile variables, time periods and data access, etc., contact the data controller:
Anders Lindblad, MD
Queen Silvia Childrens Hospital
416 85 Gothenburg
SWEDEN
Phone: +46 31 343 4336
Email: anders.lindblad@vgregion.se

Alternate Contact

Link to application form for data from the CF register for research purposes:
https://cf-registret.se/onewebmedia/Formula%CC%88r_Registeruppg.pdf

References of Studies Using/Describing Database

1. Svedberg M, Imberg H, Gustafsson PM, Tiddens H, Davies G, Lindblad A. Longitudinal lung clearance index and association with structural lung damage in children with cystic fibrosis. Thorax. 2023 Feb;78(2):176-182.

2. Kowalik A, de Monestrol I, Sorjonen K, Brockow K, Gülen T. Antibiotic hypersensitivity in cystic fibrosis - Low frequency of anaphylaxis over 16 000 courses. Br J Clin Pharmacol. 2022 Nov;88(11):4845-4853. 

3. Blomquist A, Inghammar M, Al Shakirchi M, Ericson P, Krantz C, Svedberg M, Lindblad A, Påhlman LI. Persistent Aspergillus fumigatus infection in cystic fibrosis: impact on lung function and role of treatment of asymptomatic colonization-a registry-based case-control study. BMC Pulm Med. 2022 Jul 5;22(1):263.

4. Ericson P, Hedborg A, de Monestrol I, Hjelte L, Lindberg U, Hansen C, Krantz C, Gilljam M, Lindblad A. S13. 2 The Swedish cystic fibrosis Registry facilitates the evaluation of Orkambi® treatment. Journal of Cystic Fibrosis. 2020 Jun 1;19:S22.

5. Hortal CR, Wilhelmsson S, Törnberg A, Lannefors L, Hoel L, Ersson K, Dennersten-Kvist U, Wallin K, Mårtensson M, Hedborg A. WS16. 6 Decreased performance of airway clearance and physical exercise with age in the Swedish cystic fibrosis population-what’s the solution?. Journal of Cystic Fibrosis. 2020 Jun 1;19:S28.

6. Ivarsson EB, Laine C, Larsson P, de Monestrol I, Lindblad A. ePS5. 03 Results of 2017–2019 screening of self-concept among children 6–12 years old at the 3 largest cystic fibrosis centres in Sweden. Journal of Cystic Fibrosis. 2020 Jun 1;19:S49-50.

7. Gilljam M, Hedborg A, de Monestrol I, Lindberg U, Krantz C, Hjelte L, Lindblad A. WS19. 5 Decrease of faecal calprotectin in adults after initiation of Orkambi®, a Registry-based study. Journal of Cystic Fibrosis. 2020 Jun 1;19:S32.

8. Eriksson LB, Laine C, de Monestrol I, Lindblad A, Bergenmar-Ivarsson E, Järvholm S. ePS5. 02 Development of mental health quality outcome measures in the Swedish Cystic Fibrosis Registry-pitfalls and possibilities. Journal of Cystic Fibrosis. 2020 Jun 1;19:S49.

9. Möller M, Al Shakirchi M, Eriksson LB, Hjelte L, Törnberg A, De ID, D'Esquille M. Most adult patients with cystic fibrosis at Stockholm Cystic Fibrosis Centre have a full-time or part-time occupation. Journal of Cystic Fibrosis. 2020;19(2).

10. Martensson M, Sahlberg M, Josenby LA. Physical exercise and lung function in Swedish children and adolescents with cystic fibrosis-a population-based study. Pediatric Pulmonology. 2019 Oct 1;54:S389.

National Patient Register (Denmark) **

Database Contact Data

The Danish Health Data Agency
Ørestads Boulevard 5
2300 Copenhagen S
DENMARK
Phone: +45 7221 6800
Email: kontakt@sundhedsdata.dk

Alternate Contact

Lisbeth Nielsen
Director
The Danish Health Data Agency
Ørestads Boulevard 5
2300 Copenhagen S
DENMARK
Email: lnie@sundhedsdata.dk
Phone: +45 3268 8502

References of Studies Using/Describing Database

1. Sirirungreung A, Hansen J, Ritz B, Heck JE. Association between medically diagnosed postnatal infection and childhood cancers: A matched case-control study in Denmark, 1978 to 2016. Int J Cancer. 2023 May 27. doi: 10.1002/ijc.34604. Epub ahead of print. PMID: 37243370.

2. Hammerbak-Andersen M, Klarskov N, Husby KR. Colpocleisis: reoperation risk and risk of uterine and vaginal cancer: A nationwide cohort study. Int Urogynecol J. 2023 May 22. doi: 10.1007/s00192-023-05566-6. Epub ahead of print. PMID: 37212831.

3. Jensen TL, Tejlbo Frost M, Dalhoff K, Studsgaard Petersen T. Repeated poisonings in Denmark - a nationwide study. Clin Toxicol (Phila). 2023 May 12:1-8. 

4. Okholm SH, Nagy D, Körmendiné Farkas D, Fuglsang CH, Troelsen FS, Henderson VW, Sørensen HT. Non-Traumatic Subdural Hematoma and Cancer: A Cohort Study. Clin Epidemiol. 2023 May 8;15:629-633. 

5. Placido D, Yuan B, Hjaltelin JX, Zheng C, Haue AD, Chmura PJ, Yuan C, Kim J, Umeton R, Antell G, Chowdhury A, Franz A, Brais L, Andrews E, Marks DS, Regev A, Ayandeh S, Brophy MT, Do NV, Kraft P, Wolpin BM, Rosenthal MH, Fillmore NR, Brunak S, Sander C. A deep learning algorithm to predict risk of pancreatic cancer from disease trajectories. Nat Med. 2023 May;29(5):1113-1122. 

6. Thaarup M, Nielsen PB, Olesen AE, Bitsch Poulsen M, Larsen TB, Wittström F, Overvad TF. Positive Predictive Value of Non-Traumatic Bleeding Diagnoses in the Danish National Patient Register. Clin Epidemiol. 2023 Apr 28;15:493-502. 

7. Nielsen SK, Nouhravesh N, Jensen MH, Jensen RFG, Klein MF, Saghir Z, Nielsen D, Schou M, Lamberts M. The Validity of a New Procedure-Based Definition of Cancer Status in Patients with Breast-, Lung- and Colorectal Cancer in the Danish National Patient Registry. Clin Epidemiol. 2023 Apr 25;15:483-491. 

8. Nunez Y, Balalian A, Parks RM, He MZ, Hansen J, Raaschou-Nielsen O, Ketzel M, Khan J, Brandt J, Vermeulen R, Peters S, Weisskopf MG, Re DB, Goldsmith J, Kioumourtzoglou MA. Exploring Relevant Time Windows in the Association Between PM2.5 Exposure and Amyotrophic Lateral Sclerosis: A Case-Control Study in Denmark. Am J Epidemiol. 2023 Apr 21:kwad099. doi: 10.1093/aje/kwad099. Epub ahead of print. PMID: 37092253.

9. Hasselstrøm Jensen J, Vestergaard P, Hasselstrøm Jensen M. Association between Glucose-Lowering Treatments and Risk of Diabetic Retinopathy in People with Type 2 Diabetes: A Nationwide Cohort Study. Curr Drug Saf. 2023 Apr 20. doi: 10.2174/1574886318666230420084701. Epub ahead of print. PMID: 37078347.

10. Lauritzen AD, Berg T, Jensen MB, Lillholm M, Knoop A. Identifying recurrent breast cancer patients in national health registries using machine learning. Acta Oncol. 2023 Apr;62(4):350-357. 

Danish Cause of Death Register (Denmark) **

Database Contact Data

The Danish Health Data Agency
Ørestads Boulevard 5
2300 Copenhagen S
DENMARK
Phone: +45 7221 6800
Email: kontakt@sundhedsdata.dk

Alternate Contact

Inquiries about the use of the Cause of Death Register can be addressed to:
Email: kontakt@sundhedsdata.dk

References of Studies Using/Describing Database

1. Kann AE, Jepsen P, Madsen LG, West J, Askgaard G. Cause-specific mortality in patients with alcohol-related liver disease in Denmark: a population-based study. The Lancet Gastroenterology & Hepatology. 2023 Nov 1;8(11):1028-34.

2. Holmager TL, Nymand Lophaven S, Mortensen LH, Lynge E. Temporal trends in cause-specific mortality in a rural-provincial area of Denmark, Lolland-Falster, 1970–2018. Scandinavian Journal of Public Health. 2023 Aug;51(6):853-61.

3. Erlangsen A, Jacobsen AL, Ranning A, Delamare AL, Nordentoft M, Frisch M. Transgender identity and suicide attempts and mortality in Denmark. Jama. 2023 Jun 27;329(24):2145-53.

4. Deding U, Kaalby L, Steele R, Al-Najami I, Kobaek-Larsen M, Plantener E, Madsen JB, Madsen JS, Bjørsum-Meyer T, Baatrup G. Faecal haemoglobin concentration predicts all-cause mortality. Eur J Cancer. 2023 May;184:21-29.

5. Kaalby L, Deding U, Al-Najami I, Berg-Beckhoff G, Bjørsum-Meyer T, Laurberg T, Shaukat A, Steele RJC, Koulaouzidis A, Rasmussen M, Kobaek-Larsen M, Baatrup G. Faecal haemoglobin concentrations are associated with all-cause mortality and cause of death in colorectal cancer screening. BMC Med. 2023 Jan 24;21(1):29.

6. Glinge C, Rossetti S, Oestergaard LB, Stampe NK, Lynge TH, Skals R, Winkel BG, Lodder EM, Bezzina CR, Gislason G, Banner J, Behr ER, Torp-Pedersen C, Jabbari R, Tfelt-Hansen J. Risk of Sudden Infant Death Syndrome Among Siblings of Children Who Died of Sudden Infant Death Syndrome in Denmark. JAMA Netw Open. 2023 Jan 3;6(1):e2252724.

7. Obel LM, Lindholt JS, Lasota AN, Jensen HK, Benhassen LL, Mørkved AL, Srinanthalogen R, Christiansen M, Bundgaard H, Liisberg M. Clinical Characteristics, Incidences, and Mortality Rates for Type A and B Aortic Dissections: A Nationwide Danish Population-Based Cohort Study From 1996 to 2016. Circulation. 2022 Dec 20;146(25):1903-1917.

8. Jensen A, Greisen G, Stensballe LG. Socioeconomic background affects mortality in Danish children with severe chronic disease. Acta Paediatr. 2022 Dec;111(12):2393-2399.

9. Yang F, Janszky I, Gissler M, Roos N, Wikström AK, Yu Y, Chen H, Bonamy AE, Li J, László KD. Association of Maternal Preeclampsia With Offspring Risks of Ischemic Heart Disease and Stroke in Nordic Countries. JAMA Netw Open. 2022 Nov 1;5(11):e2242064.

10. Huang C, Wei K, Lee PMY, Qin G, Yu Y, Li J. Maternal hypertensive disorder of pregnancy and mortality in offspring from birth to young adulthood: national population based cohort study. BMJ. 2022 Oct 19;379:e072157. doi: 10.1136/bmj-2022-072157. Erratum in: BMJ. 2022 Nov 11;379:o2726.

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