Norwegian Immunisation Registry (SYSVAK) (Norway) **

Database Contact Data

All enquiries regarding the disclosure of health data should be directed to the e-mail address: datatilgang@fhi.no

Alternate Contact

N/A

References of Studies Using/Describing Database

1. Dong L, Nygård M, Støer NC, Klungsøyr O, Hansen BT. Real‐world effectiveness of HPV vaccination against cervical neoplasia among birth cohorts ineligible for routine vaccination. International Journal of Cancer. 2023 Jul 15;153(2):399-406.

2. Nilsen TS, Gulseth HL, Daae A, Indseth T. Coronavirus immunisation abroad among foreign-born persons in Norway. Tidsskrift for Den norske legeforening. 2022 Jun 27.

3. Hagerup-Jenssen M, Kongsrud S, Riise ØR. Suboptimal MMR2 vaccine coverage in six counties in Norway detected through the national immunisation registry, April 2014 to April 2017. Euro Surveill. 2017 Apr 27;22(17):30518.

4. Riise ØR, Laake I, Bergsaker MA, Nøkleby H, Haugen IL, Storsæter J. Monitoring of timely and delayed vaccinations: a nation-wide registry-based study of Norwegian children aged < 2 years. BMC Pediatr. 2015 Nov 13;15:180.

5. Riise O. 1066: Delay in the Norwegian Immunisation Programme. Open Forum Infect Dis. 2014 Dec;1(Suppl 1):S312–3.

6. Steens A, Bergsaker MA, Aaberge IS, Rønning K, Vestrheim DF. Prompt effect of replacing the 7-valent pneumococcal conjugate vaccine with the 13-valent vaccine on the epidemiology of invasive pneumococcal disease in Norway. Vaccine. 2013 Dec 16;31(52):6232-8.

7. Trogstad L, Ung G, Hagerup-Jenssen M, Cappelen I, Haugen IL, Feiring B. The Norwegian immunisation register--SYSVAK. Euro Surveill. 2012 Apr 19;17(16):20147.

8. Lavine JS, Bjørnstad ON, de Blasio BF, Storsaeter J. Short-lived immunity against pertussis, age-specific routes of transmission, and the utility of a teenage booster vaccine. Vaccine. 2012 Jan 11;30(3):544-51.

9. Guzmán Herrador BR, Aavitsland P, Feiring B, Riise Bergsaker MA, Borgen K. Usefulness of health registries when estimating vaccine effectiveness during the influenza A(H1N1)pdm09 pandemic in Norway. BMC Infect Dis. 2012 Mar 20;12:63.

10. Waalen K, Kilander A, Dudman S G, Krogh G H, Aune T, Hungnes O. High prevalence of antibodies to the 2009 pandemic influenza A(H1N1) virus in the Norwegian population following a major epidemic and a large vaccination campaign in autumn 2009. Euro Surveill. 2010;15(31):pii=19633.

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.

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