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. White P, Brennan A, McDevitt J, Murray D, Mohan CM, Fitzpatrick P, Mooney T, Smith A, Mullooly M, Bambury N. Screen-detected breast cancer and cancer stage by area-level deprivation: a descriptive analysis using data from the National Cancer Registry Ireland. Eur J Public Health. 2025 Apr 1;35(2):347-352.

2. Millar SR, Mohamed MB, Mykytiv V, McMorrow R, Donnelly C, O'Leary E, Orfali N, Murphy P, Browne PV, Quinn J, O'Gorman P, Ryan MF, Clifford R, Hassadi EE, O'Shea D, Gilligan O, Krawczyk J, O'Dwyer ME, Szegezdi E, Cahill MR. Blood Cancer Network Ireland (BCNI) and National Cancer Registry Ireland (NCRI) collaboration: challenges and utility of an Enhanced Blood Cancer Outcomes Registry (EBCOR) pilot. Ir J Med Sci. 2024 Dec;193(6):2615-2623.

3. Sexton GP, Crotty TJ, Staunton SM, Healy ML, O'Neill JP, Timon C, Kinsella JB, Lennon P, Fitzgerald CW. Thyroid cancer epidemiology in Ireland from 1994 to 2019 - Rising diagnoses without mortality benefit. Surgeon. 2024 Oct 7:S1479-666X(24)00122-7.

4. Zhang M, Kelly C, McCarthy T, Tierney P, Brennan A, Burke L, McGrath C, Mullooly M, Murray D, Bennett K. Examining the COVID-19 impact on cancer surgery in Ireland using three national data sources. Glob Epidemiol. 2024 Aug 3;8:100159.

5. 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.

6. 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.

7. 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.

8. 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.

9. 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.

10. 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.

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

If you cannot reach the database manager, you may contact the Swedish Cystic Fibrosis Registry by completing the contact form at: https://www.cf-registret.se/kontakt

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. Nilsson M. P325 Nutritional status with specific focus in fat soluble vitamins in Swedish patients with cystic fibrosis–a registry study. Journal of Cystic Fibrosis. 2025 Jun 1;24:S169.

2. Svedberg M, Holmberg L, Imberg H. P123 Evaluating pulmonologists' accuracy in visually estimating lung function trends in cystic fibrosis. Journal of Cystic Fibrosis. 2025 Jun 1;24:S105.

3. Krantz C. WS13. 06Absence of neonatal screening for cystic fibrosis in Sweden causes delay in effective treatment. Journal of Cystic Fibrosis. 2025 Jun 1;24:S27.

4. Svedberg M, Hagel E, Kranz C, Imberg H. P112 Real-time estimation of individual long-and short-term lung functions trends in persons with cystic fibrosis within the Swedish cystic fibrosis registry. Journal of Cystic Fibrosis. 2024 Jun 1;23:S119.

5. Al Shakirchi M, Sorjonen K, Hjelte L, Klingspor L, Bergman P, Ericson P, Svedberg M, Lindberg U, Hansen C, Monestrol ID. Impact of lumacaftor/ivacaftor on the bacterial and fungal respiratory pathogens in cystic fibrosis: A prospective multicenter cohort study in Sweden. Therapeutic Advances in Respiratory Disease. 2024 May;18:17534666241254090.

6. Lindblad A, Monestrol I, Gilljam M, Krantz C, McGarry LJ, Banefelt J, Aldvén M. Clinical, economic, and societal burden of cystic fibrosis and the impact of the CFTR modulator, lumacaftor/ivacaftor: an assessment using linked registry data in Sweden. J Med Econ. 2024 Jan-Dec;27(1):897-906.

7. 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.

8. 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.

9. 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.

10. 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.

National Patient Register (Denmark) **

Database Contact Data

The Danish Health Data Agency
Ørestads Boulevard 5
2300 Copenhagen S
DENMARK
Phone: +45 7221 6800
Email 1: LPRdata@sundhedsdata.dk
Email 2: kontakt@sundhedsdata.dk

Alternate Contact

1. If you have questions about patient registration in the National Patient Register, you can write to: patientregistrering@sundhedsdata.dk.

2. If you have questions about Research services, please email: forskerservice@sundhedsdata.dk

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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