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.
Jun 13, 2023: We allow users to upgrade their subscription ANY TIME of the year
If you have one subscription level (e.g., 5 users) and want to add more users, we can upgrade your subscription level that allows more users (e.g., up to 10 or Unlimited users).
Jun 7, 2023: Switching companies? Take your BTD access with you…
It’s possible for a B.R.I.D.G.E.
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
Stephanie Jebsen Fagerås
Product Owner NCoDR
Department of Health Registers
Norwegian Institute of Public Health
Email: StephanieJebsen.Fageras@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. Alm-Kruse K, Tjelmeland I, Reiner A, Kvåle R, Kramer-Johansen J. Use of healthcare services before and after out-of-hospital cardiac arrest. Resuscitation. 2023 Jun;187:109805.
2. Falch CM, Olarescu NC, Bollerslev J, Dekkers OM, Heck A. Trends in incidence and mortality risk for acromegaly in Norway: a cohort study. Endocrine. 2023 Apr;80(1):152-159.
3. Basnet P, Skjaerven R, Sørbye LM, Morken NH, Klungsøyr K, Singh A, Mannseth J, Harmon QE, Kvalvik LG. Long-term cardiovascular mortality in women with twin pregnancies by lifetime reproductive history. Paediatr Perinat Epidemiol. 2023 Jan;37(1):19-27.
4. Hamina A, Odsbu I, Borchgrevink PC, Chen LC, Clausen T, Espnes KA, Gjesdal K, Handal M, Hartikainen S, Hjellvik V, Holter MTS, Høibø T, Kurita GP, Langaas HC, Lid TG, Nøst TH, Sjøgren P, Skurtveit S; POINT study group. Cohort Description: Preventing an Opioid Epidemic in Norway - Focusing on Treatment of Chronic Pain (POINT) - A National Registry-Based Study. Clin Epidemiol. 2022 Dec 8;14:1477-1486.
5. Cowdery SP, Bjerkeset O, Sund ER, Mohebbi M, Pasco JA, Berk M, Williams LJ. Depressive symptomology and cancer incidence in men and women: Longitudinal evidence from the HUNT study. J Affect Disord. 2022 Nov 1;316:1-9.
6. Ellingsen CL, Alfsen GC, Ebbing M, Pedersen AG, Sulo G, Vollset SE, Braut GS. Garbage codes in the Norwegian Cause of Death Registry 1996-2019. BMC Public Health. 2022 Jul 7;22(1):1301.
7. Bukten A, Skjærvø I, Stavseth MR. The association of prison security level with mortality after release from prison: a retrospective national cohort study (2000-16). Lancet Public Health. 2022 Jul;7(7):e583-e592.
8. Pretorius M, Lundstam K, Heck A, Fagerland MW, Godang K, Mollerup C, Fougner SL, Pernow Y, Aas T, Hessman O, Rosén T, Nordenström J, Jansson S, Hellström M, Bollerslev J. Mortality and Morbidity in Mild Primary Hyperparathyroidism: Results From a 10-Year Prospective Randomized Controlled Trial of Parathyroidectomy Versus Observation. Ann Intern Med. 2022 Jun;175(6):812-819.
9. Stene-Larsen K, Raknes G, Engdahl B, Qin P, Mehlum L, Strøm MS, Reneflot A. Suicide trends in Norway during the first year of the Covid-19 pandemic. A register-based cohort study. Eur Psychiatry. 2022 Apr 19;65(1):1-24.
10. Pethrus CM, Vedtofte MS, Neovius K, Borud EK, Neovius M. Pooled analysis of all-cause and cause-specific mortality among Nordic military veterans following international deployment. BMJ Open. 2022 Apr 12;12(4):e052313.