National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) (United Kingdom)

Database Contact Data

For requests for data which sit under the National Congenital Anomaly and Rare Diseases Registration Service (NCARDRS) suite of products, please email ndrsenquiries@nhs.net.

To discuss any aspect of DARS or an existing application call the team on +44 (0)300 303 5678 or email enquiries@nhsdigital.nhs.uk.

Alternate Contact

1. Danielle Martin
National Senior Data Analyst 
National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) 
Public Health England
Wellington House
133-155 Waterloo Road
London, England SE1 8UG
UNITED KINGDOM
Email: danielle.martin@phe.gov.uk  
Phone: +44 (0)191 242 6003
Mobile: +44 (0) 7554111236

2. If you cannot reach the database manager, you may contact the organization by completing the contact form at: https://digital.nhs.uk/ndrs/ndrs-contact-page
 

References of Studies Using/Describing Database

1. Broughan JM, Martin D, Higgins T, Swan G, Cullum A, Kurinczuk JJ, Draper ES, Luyt K, Wellesley DG, Stevens S, Tedstone A, Rankin J. Prevalence of neural tube defects in England prior to the mandatory fortification of non-wholemeal wheat flour with folic acid: a population-based cohort study. Arch Dis Child. 2024 Jan 22;109(2):106-112.

2. Broughan JM, Wreyford B, Martin D, Melis G, Randall K, Obaro E, Broggio J, Aldridge N, Stoianova S, Johnson C, Gibbard D, Stevens S, Fleming KM. Cohort profile: the National Congenital Anomaly Registration Dataset in England. BMJ Open. 2024 Jan 12;14(1):e077743.

3. Odingo M, Rutter M, Bowley J, Peach EJ, Lanyon PC, Grainge MJ, Stillwell P, McPhail S, Bythell M, Aston J, Stevens S, McCormack R, Brogan P, Pearce FA. The incidence of Kawasaki disease using hospital admissions data for England 2006-2021. Rheumatology (Oxford). 2023 Sep 1;62(9):3117-3125.

4. Moss C, Roked F, Davis PJ, Khan M, Tyler C, Ibbs S, Ewer AK. Birth incidence and outcome of harlequin ichthyosis and collodion membrane in the UK and Ireland: a national 2-year prospective surveillance study. British Journal of Dermatology. 2023 Jan;188(1):139-40.

5. Aldridge N, Pandya P, Rankin J, Miller N, Broughan J, Permalloo N, McHugh A, Stevens S. Detection rates of a national fetal anomaly screening programme: A national cohort study. BJOG: An International Journal of Obstetrics & Gynaecology. 2023 Jan;130(1):51-8.

6. Melis G, Martin D, Obaro E, Tempest E, Broughan J, Miller N. P25 The national congenital anomaly and rare disease registration service (NCARDRS): data profile, its application and development towards administrative data linkage in England. 2023; A65-A66.

7. Aslam AA, Baksh RA, Pape SE, Strydom A, Gulliford MC, Chan LF, Go-DS21 Consortium, Herault Yann Strydom Andre Chan Li Potier Marie-Claude Beckers Johannes Liò Pietro Dierssen Mara. Diabetes and obesity in Down Syndrome across the lifespan: a retrospective cohort study using UK electronic health records. Diabetes care. 2022 Dec;45(12):2892-9.

8. West J, Stilwell P, Liu H, Ban L, Bythell M, Card T, Lanyon P, Nanduri V, Rankin J, Bishton M, Crooks C. Factors Influencing 1-Year Survival in Haemphagocytic Lymphohistiocytosis: A National Cohort Study in England. Blood. 2022 Nov 15;140(Supplement 1):5469-70.

9. Bishton M, Crooks C, Liu H, Ban L, Bythell M, Card T, Lanyon P, Nanduri V, Rankin J, Stilwell P, West J. Haemphagocytic Lymphohistiocytosis in an English Nationwide Cohort Confirms Increasing Incidence and Variation in Trigger Factors. Blood. 2022 Nov 15;140(Supplement 1):2599-600.

10. Rutter M, Lanyon PC, Grainge MJ, Hubbard R, Peach E, Bythell M, Stilwell P, Aston J, Stevens S, Pearce FA. COVID-19 infection, admission and death among people with rare autoimmune rheumatic disease in England: results from the RECORDER project. Rheumatology. 2022 Aug;61(8):3161-71.

Estonian Cancer Screening Register (Estonia)

Database Contact Data

The Estonian Cancer Screening Register
National Institute for Health Development
Paldiski mnt 80
Tallinn
ESTONIA
Phone +372 5388 9686
Email: soeluuring@tai.ee

Alternate Contact

N/A

References of Studies Using/Describing Database

1. Orumaa M, Innos K, Suurna M, Veerus P. Cervical cancer screening history among women diagnosed with cervical cancer in Estonia 2017-18. Eur J Public Health. 2023 Feb 3;33(1):64-68.

2. Reima H, Soplepmann J, Elme A, Lõhmus M, Tiigi R, Uksov D, Innos K. Changes in the quality of care of colorectal cancer in Estonia: a population-based high-resolution study. BMJ Open. 2020 Oct 8;10(10):e035556. doi: 10.1136/bmjopen-2019-035556.

3. Analysis of selected quality indicators in the Estonian cervical cancer screening program in 2016. Anion, E; Veerus, P. Master thesis. Defended 2018.

4. Vaccarella S, Franceschi S, Zaridze D, Poljak M, Veerus P, Plummer M, Bray F. Preventable fractions of cervical cancer via effective screening in six Baltic, central, and eastern European countries 2017-40: a population-based study. Lancet Oncol. 2016 Oct;17(10):1445-1452.

5. Innos K, Valvere V, Padrik P, Eelma E, Kütner R, Lehtsaar J, Tekkel M. Mammography use and mode of detection among breast cancer patients in Estonia. Women Health. 2016;56(2):129-40.

6. Veerus P, Arbyn M, Amati C, Paolo B; EUROCHIP Working Group. Impact of implementing a nationwide cervical cancer screening program on female population coverage by Pap-tests in Estonia. Tumori. 2010 Jul-Aug;96(4):524-8.

Norwegian Cardiovascular Disease Registry (Norway)

Database Contact Data

Marthe Østrem
Email: hkr.oppdrag@fhi.no 

Alternate Contact

Norwegian Institute of Public Health
Postboks 973 Sentrum
5808 Bergen
NORWAY
Phone number: +47 21 07 70 00 
Email: Folkehelseinstituttet@fhi.no

References of Studies Using/Describing Database

1. Tverdal A, Magnus P. Mortality in Norwegian men and women with an incident myocardial infarction. European Journal of Preventive Cardiology. 2023 Nov;30(16):e72-3.

2. Forster RB, Kjellstadli C, Myklebust TÅ, Egeland G, Sulo G, Bjørge T, Bønaa KH, Juliusson PB, Kvåle R. Treatment and 30-day mortality after myocardial infarction in prostate cancer patients: A population-based study from Norway. Cardiology. 2023 Feb 28;148(1):83-92.

3. Gynnild MN, Hageman SHJ, Dorresteijn JAN, Spigset O, Lydersen S, Wethal T, Saltvedt I, Visseren FLJ, Ellekjær H. Risk Stratification in Patients with Ischemic Stroke and Residual Cardiovascular Risk with Current Secondary Prevention. Clin Epidemiol. 2021 Sep 17;13:813-823.

4. Ildstad F, Ellekjær H, Wethal T, Lydersen S, Fjærtoft H, Indredavik B. ABCD3-I and ABCD2 Scores in a TIA Population with Low Stroke Risk. Stroke Res Treat. 2021 Feb 25;2021:8845898.

5. Johannessen TR, Atar D, Vallersnes OM, Larstorp ACK, Mdala I, Halvorsen S. Comparison of a single high-sensitivity cardiac troponin T measurement with the HEART score for rapid rule-out of acute myocardial infarction in a primary care emergency setting: a cohort study. BMJ Open. 2021 Feb 24;11(2):e046024.

6. Brustugun OT. Cancer and coronavirus risk. Tidsskr Nor Laegeforen. 2021 Feb 1;141(2).

7. Mohamed Ali A, Wasim D, Løland KH, Rotevatn S, Bleie Ø, Saeed S. Impact of transcatheter aortic valve implantation on left ventricular function recovery, mass regression and outcome in patients with aortic stenosis: protocol of the TAVI-NOR prospective study. BMJ Open. 2021 Jan 20;11(1):e039961.

8. Kvåle R, Bønaa KH, Forster R, Gravningen K, Júlíusson PB, Myklebust TÅ. Does a history of cardiovascular disease or cancer affect mortality after SARS-CoV-2 infection? Tidsskr Nor Laegeforen. 2020 Dec 29;140(2).

9. Rostami S, Hoff M, Dalen H, Hveem K, Videm V. Genetic risk score associations for myocardial infarction are comparable in persons with and without rheumatoid arthritis: the population-based HUNT study. Scientific Reports. 2020 Nov 24;10(1):1-9.

10. Johannessen TR, Vallersnes OM, Halvorsen S, Larstorp AC, Mdala I, Atar D. Pre-hospital one-hour troponin in a low-prevalence population of acute coronary syndrome: OUT-ACS study. Open Heart. 2020 Jul 1;7(2):e001296.

Icelandic Coronary Event Register (Iceland)

Database Contact Data

Holtasmári 1, 2. floor
201 Kópavogur
ICELAND
Phone: +354 535-1800
Fax: +354 535-1801
Email: afgreidsla@hjarta.is

Alternate Contact

Directorate of Health
Katrínartún 2
105 Reykjavík
Kt. 710169-5009
ICELAND
Phone + 354 510 1900
Email 1: mottaka@landlaeknir.is
Email 2: johannag@hjarta.is

References of Studies Using/Describing Database

1. Aspelund T, Gudnason V, Magnusdottir BT, Andersen K, Sigurdsson G, Thorsson B, Steingrimsdottir L, Critchley J, Bennett K, O'Flaherty M, Capewell S. Analysing the large decline in coronary heart disease mortality in the Icelandic population aged 25-74 between the years 1981 and 2006. PLoS One. 2010 Nov 12;5(11):e13957.

2. Aspelund T, Thorgeirsson G, Sigurdsson G, Gudnason V. Estimation of 10-year risk of fatal cardiovascular disease and coronary heart disease in Iceland with results comparable with those of the Systematic Coronary Risk Evaluation project. Eur J Cardiovasc Prev Rehabil. 2007 Dec;14(6):761-8.

3. Andresdottir MB, Sigfusson N, Sigvaldason H, Gudnason V. Erythrocyte sedimentation rate, an independent predictor of coronary heart disease in men and women: The Reykjavik Study. Am J Epidemiol. 2003 Nov 1;158(9):844-51.

4. Sigfusson N, Sigurdsson G, Agnarsson U, Gudmundsdottir II, Stefansdottir I, Sigvaldason H, Gudnason V. Declining coronary heart disease mortality in Iceland: contribution by incidence, recurrence and case fatality rate. Scand Cardiovasc J. 2002 Dec;36(6):337-41.

5. Tunstall-Pedoe H, Kuulasmaa K, Amouyel P, Arveiler D, Rajakangas AM, Pajak A. Myocardial infarction and coronary deaths in the World Health Organization MONICA Project. Registration procedures, event rates, and case-fatality rates in 38 populations from 21 countries in four continents. Circulation. 1994 Jul;90(1):583-612. 

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