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.

May 31, 2023: The Norwegian Cause of Death Registry profile has just been added

This registry collects data on deaths by age, sex, cause, place of death, and place of residence for Norway. It contains digitized cause of death data dating back to 1951. Electronic death certificates were introduced in 2018, and electronic delivery is mandatory since January 1, 2022. The registry collects death certificates for all deaths that occur in the country, including deceased who are not registered as inhabitants of Norway. It also registers the deaths of Norwegians who die abroad.

Norwegian Cause of Death Registry (Norway)

Database Contact Data

Silje Rognsvåg Reistad
Produkteier Dødsårsaksregisteret
Avdeling for helseregistre
Folkehelseinstituttet
NORWAY
Postadresse: Folkehelseinstituttet, Postboks 973 Sentrum, 5808 Bergen, Norway
Besøksadresse: Zander Kaaes gate 7, 5015 Bergen, Norway 
Phone: +47 21 07 70 63
Email: Silje.Rognsvag.Reistad@fhi.no

Alternate Contact

You can email datatilgang@fhi.no for enquiries about health registries at NIPH; they will be directed to the correct person depending on the registry and topic

References of Studies Using/Describing Database

1. Eng HM, Sveen KA, Fagerås SJ, Strøm MS, Diep LM, Juliusson PB, Alfsen GC. Introduction of electronic death notification in Norway-Impact on diabetes mortality registration. PLoS One. 2024 Dec 2;19(12):e0311106.

2. Kristensen JH, Baravelli CM, Leino T, Pallesen S, Griffiths MD, Erevik EK. Association between gambling disorder and suicide mortality: a comparative cohort study using Norwegian health registry data. Lancet Reg Health Eur. 2024 Nov 11;48:101127.

3. Nilsson A, Emilsson L, Kepp KP, Knudsen AKS, Forthun I, Madsen C, Björk J, Lallukka T. Cause-specific excess mortality in Denmark, Finland, Norway, and Sweden during the COVID-19 pandemic 2020-2022: a study using nationwide population data. Eur J Epidemiol. 2024 Sep;39(9):1037-1050.

4. Kostovski E, Hamina A, Hjellvik V, Clausen T, Skurtveit S. Increased cancer incidence and mortality among people with opioid use-related disorders: A nation-wide cohort study. Addiction. 2024 Sep;119(9):1575-1584.

5. Aune D, Vardaxis I, Lindqvist BH, Brumpton BM, Strand LB, Horn JW, Bakken IJ, Romundstad PR, Mukamal KJ, Ljung R, Janszky I, Sen A. Dispensed prescription medications and short-term risk of pulmonary embolism in Norway and Sweden. Sci Rep. 2024 Aug 29;14(1):20054.

6. Michel YA, Aas E, Augestad LA, Burger E, Thoresen L, Bjørnelv GMW. Healthcare use and costs in the last six months of life by level of care and cause of death. BMC Health Serv Res. 2024 May 30;24(1):688.

7. Bjørnelv GW, Aas E, Aaltonen M, Hagen TP, Thoresen L, Forma L. Place of living at end-of-life according to cause of death: a comparative analysis of all decedents 70 years or older in 2009-2013 in Finland and Norway. Ann Palliat Med. 2024 May;13(3):496-512.

8. Wyatt S, Kvalvik LG, Singh A, Klungsøyr K, Østbye T, Skjærven R. Heterogeneity in the risk of cardiovascular disease mortality after the hypertensive disorders of pregnancy across mothers' lifetime reproductive history. Paediatr Perinat Epidemiol. 2024 Mar;38(3):230-237.

9. Strømme MF, Bartz-Johannessen C, Kjelby E, Mehlum L, Mykletun A, Kroken RA, Johnsen E, Gjestad R. Risk factors for mortality in patients admitted to a psychiatric acute ward: A prospective cohort study. Acta Psychiatr Scand. 2024 Mar;149(3):244-255.

10. Raknes G, Fagerås SJ, Sveen KA, Júlíusson PB, Strøm MS. Excess non-COVID-19 mortality in Norway 2020-2022. BMC Public Health. 2024 Jan 22;24(1):244.

May 30, 2023: Our 5th healthcare database profile from Sweden

Part of Riks-Stroke (RS), the Swedish Stroke Register established in 1994, a national register for acute stroke care; all Swedish hospitals admitting acute stroke and TIA (Transient Ischemic Attacks) patients participate. The Transient Ischemic Attacks (TIA) Registry contains more than 100,000 total TIA events recorded. This makes RS one of the world’s largest TIA registers.

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