Apr 26, 2023: Learn all about the Icelandic Register of Communicable Diseases

Starting in 1997, the Icelandic Register of Communicable Diseases includes diseases, agents causing diseases and events, immunisations, and use of antimicrobial drugs, and is intended to be of use in preventive measures and in epidemiological research. Notifiable communicable diseases which can pose a threat to public welfare are subject to registration.

Icelandic Register of Communicable Diseases (Iceland)

Database Contact Data

Sigríður Haralds Elínardóttir
Head of Division, Health Information
Directorate of Health
Katrínartún 2 
IS – 105 Reykjavík
ICELAND
Phone: +354 510 1900
Email: sigridur.haraldsd.elinardottir@landlaeknir.is

Alternate Contact

https://island.is/en/o/directorate-of-health/contact-the-directorate-of-health

References of Studies Using/Describing Database

N/A

Apr 19, 2023: Were you aware that DGI offers some discounts all year round?

Academia / Nonprofits / Government agencies always get a discounted rate, as do companies that let us profile their population healthcare databases/registries in our resource. In addition, if you sign up for Unlimited Users worldwide for 2 or more years, you can receive a 10% discount (pre-paid)! Finally, licensing our B.R.I.D.G.E.

Apr 11, 2023: We welcome NCRAS, our newest cancer registry from the United Kingdom

With registrations starting back in 1948, the National Cancer Registration and Analysis Service (NCRAS) is run by the National Disease Registration Service (NDRS) which is part of NHS England. It is responsible for cancer registration in England to support cancer epidemiology, public health, service monitoring and research. NCRAS is responsible for systematic collection of data about cancer and tumour diseases in England.

National Cancer Registration and Analysis Service (NCRAS) (United Kingdom)

Database Contact Data

Sarah Stevens
Associate Director for NDRS
(National Disease Registration Service)
Email: sarah.stevens1@nhs.net

Alternate Contact

N/A

References of Studies Using/Describing Database

1. White BE, Russell B, Remmers S, Rous B, Chandrakumaran K, Wong KF, Van Hemelrijck M, Srirajaskanthan R, Ramage JK. Sex Differences in Survival from Neuroendocrine Neoplasia in England 2012-2018: A Retrospective, Population-Based Study. Cancers (Basel). 2023 Mar 20;15(6):1863. 

2. Sundar S, Nordin A, Morrison J, Wood N, Ghaem-Maghami S, Nieto J, Phillips A, Butler J, Burton K, Gornall R, Dobbs S, Glasspool R, Peevor R, Ledermann J, McNeish I, Ratnavelu N, Duncan T, Frost J, Lim K, Michael A, Brockbank E, Gajjar K, Taylor A, Bowen R, Andreou A, Ganesan R, Nicum S, Edmondson R, Clayton R, Balega J, Rolland P, Maxwell H, Fotopoulou C. British Gynaecological Cancer Society Recommendations for Evidence Based, Population Data Derived Quality Performance Indicators for Ovarian Cancer. Cancers (Basel). 2023 Jan 4;15(2):337.

3. Paisey SA, Weerasuriya S, Palmer K, White BE, Srirajaskanthan R, Chandrakumaran K, Ramage JK. Primary renal neuroendocrine neoplasms: A systematic literature review, report of four local cases, and original survival analysis of 63 patients from a national registry 2012-2018. J Neuroendocrinol. 2022 Dec;34(12):e13215.

4. M A, S C, J F, C L, A B, L P, Sj S. Incidence and Outcome of Breast Sarcomas in England (2013-2018): An analysis from the National Cancer Registration and Analysis Service. Eur J Cancer. 2022 Oct;174:48-56. 

5. White BE, Rous B, Chandrakumaran K, Wong K, Bouvier C, Van Hemelrijck M, George G, Russell B, Srirajaskanthan R, Ramage JK. Incidence and survival of neuroendocrine neoplasia in England 1995-2018: A retrospective, population-based study. Lancet Reg Health Eur. 2022 Sep 23;23:100510. 

6. Aggarwal A, Han L, van der Geest S, Lewis D, Lievens Y, Borras J, Jayne D, Sullivan R, Varkevisser M, van der Meulen J. Health service planning to assess the expected impact of centralising specialist cancer services on travel times, equity, and outcomes: a national population-based modelling study. Lancet Oncol. 2022 Sep;23(9):1211-1220. 

7. Ng OH, Lunevicius R, Arthur JD. Rising incidence of colorectal cancer in individuals younger than 50 years and increasing mortality from rectosigmoid cancer in England. Colorectal Dis. 2021 Oct;23(10):2637-2646.

8. Wanis HA, Møller H, Ashkan K, Davies EA. The incidence of major subtypes of primary brain tumors in adults in England 1995-2017. Neuro Oncol. 2021 Aug 2;23(8):1371-1382.

9. Lai J, Mak V, Bright CJ, Lyratzopoulos G, Elliss-Brookes L, Gildea C. Reviewing the impact of 11 national Be Clear on Cancer public awareness campaigns, England, 2012 to 2016: A synthesis of published evaluation results. Int J Cancer. 2021 Mar 1;148(5):1172-1182. 

10. Burton A, Tataru D, Driver RJ, Bird TG, Huws D, Wallace D, Cross TJS, Rowe IA, Alexander G, Marshall A; HCC-UK/BASL/NCRAS Partnership Steering Group. Primary liver cancer in the UK: Incidence, incidence-based mortality, and survival by subtype, sex, and nation. JHEP Rep. 2021 Jan 19;3(2):100232.

Apr 4, 2023 – Now uploaded - National Surveillance System profile from Canada

With data starting in 2003, the National Ambulatory Care Reporting System (NACRS) provides valuable insights into emergency department (ED) visits and lengths of stay reported by participating provinces and territories in Canada. NACRS collects demographic, administrative, clinical and service-specific data for ED, day surgery and other ambulatory care visits.

National Ambulatory Care Reporting System (NACRS - Canada) **

Database Contact Data

Email: help@cihi.ca
Phone: +1 613-241-5543

Alternate Contact

1. CIHI publishes a wealth of publicly available statistics (see https://www.cihi.ca/en/access-data-and-reports).

2. If you’re looking for more detailed information, you can make a custom data request by using their Data Inquiry Form at https://www.cihi.ca/en/data-inquiry-form.

References of Studies Using/Describing Database

1. Nair R, Khan K, Stang JM, Halabi ML, Youngson E, Alrohimi A, Shuaib A. Thrombolysis in Stroke Mimics: Comprehensive Stroke Centers vs Telestroke Sites. Can J Neurol Sci. 2022 Dec 1:1-7. 

2. Hanna NM, Nguyen P, Chung W, Groome PA. Time to treatment of esophageal cancer in Ontario: A population-level cross-sectional study. JTCVS Open. 2022 Aug 20;12:430-449.

3. Morin KA, Marsh TN, Eshakakogan C, Eibl JK, Spence M, Gauthier G, Walker JD, Sayers D, Ozawanimke A, Bissaillion B, Marsh DC. Community trial evaluating the integration of Indigenous healing practices and a harm reduction approach with principles of seeking safety in an Indigenous residential treatment program in northern Ontario. BMC Health Serv Res. 2022 Aug 16;22(1):1045. 

4. Lukina AO, Burstein B, Szyszkowicz M. Urban air pollution and emergency department visits related to central nervous system diseases. PLoS One. 2022 Jun 27;17(6):e0270459. 

5. Wijeratne DT, Housin A, Lajkosz K, Lougheed MD, Xiong PY, Barber D, Doliszny KM, Archer SL. Using health administrative data to identify patients with pulmonary hypertension: A single center, proof of concept validation study in Ontario, Canada. Pulm Circ. 2022 Feb 4;12(1):e12040.

6. Strum RP, Tavares W, Worster A, Griffith LE, Costa AP. Emergency department interventions that could be conducted in subacute care settings for patients with nonemergent conditions transported by paramedics: a modified Delphi study. CMAJ Open. 2022 Jan 11;10(1):E1-E7. 

7. Strum RP, Mowbray FI, Worster A, Tavares W, Leyenaar MS, Correia RH, Costa AP. Examining the association between paramedic transport to the emergency department and hospital admission: a population-based cohort study. BMC Emerg Med. 2021 Oct 12;21(1):117.

8. Bhattarai A, Dimitropoulos G, Marriott B, Paget J, Bulloch AGM, Tough SC, Patten SB. Can the adverse childhood experiences (ACEs) checklist be utilized to predict emergency department visits among children and adolescents? BMC Med Res Methodol. 2021 Sep 25;21(1):195. 

9. Szyszkowicz M, Schoen S, de Angelis N. Air Pollution and Emergency Department Visits for Disease of the Genitourinary System. Environ Health Insights. 2021 Jun 16;15:11786302211025360. 

10. Bouchouar E, Hetman BM, Hanley B. Development and validation of an automated emergency department-based syndromic surveillance system to enhance public health surveillance in Yukon: a lower-resourced and remote setting. BMC Public Health. 2021 Jun 29;21(1):1247.

Mar 30, 2023: Introducing BADBIR, a UK psoriasis registry

The British Association of Dermatologists Biologic Interventions Register (BADBIR) is a national register of all patients receiving biologic therapy for the treatment of psoriasis in the United Kingdom. The National Institute for Health and Clinical Excellence (NICE) has recommended that all patients in the UK receiving these new therapies for Psoriasis should be registered in BADBIR. BADBIR has grown to be the largest psoriasis study of its kind globally.

British Association of Dermatologists Biologic Interventions Register (BADBIR) (United Kingdom) **

Database Contact Data

BADBIR
The University of Manchester
First Floor Bright Building
Manchester Science Park
Manchester M15 6GZ
UNITED KINGDOM
Main Office Phone: +44 0161 306 1896
Email: badbir@manchester.ac.uk

Alternate Contact

1. Ian Evans
Manager
The University of Manchester
First Floor Bright Building
Manchester Science Park
Manchester M15 6GZ
UNITED KINGDOM
Email: Ian.Evans@manchester.ac.uk

2. If you are interested in using BADBIR data as a researcher, please email Zin Mon (Research Manager) at research@bad.org.uk to describe your data request.

References of Studies Using/Describing Database

1. Al-Janabi A, Eyre S, Foulkes AC, Khan AR, Dand N, Burova E, DeSilva B, Makrygeorgou A, Davies E, Smith CH, Griffiths CEM, Morris AP, Warren RB; BSTOP Study Group and the BADBIR Study Group. Atopic Polygenic Risk Score Is Associated with Paradoxical Eczema Developing in Patients with Psoriasis Treated with Biologics. J Invest Dermatol. 2023 Aug;143(8):1470-1478.e1.

2. Phan DB, Bewley AP, Smith CH, Mackenzie T, Griffiths CEM, Lunt M, Warren RB, Yiu ZZN. Uptake of tumour necrosis factor-alpha inhibitor biosimilars for psoriasis: a drug utilization study from the British Association of Dermatologists Biologic and Immunomodulators Register (BADBIR). Br J Dermatol. 2023 Jul 7;189(1):62-70.

3. Alabas OA, Mason KJ, Yiu ZZN, Warren RB, Lunt M, Smith CH, Griffiths CEM; BADBIR Study Group. Effectiveness and survival of methotrexate versus adalimumab in patients with moderate-to-severe psoriasis: A cohort study from the British Association of Dermatologists Biologics and Immunomodulators Register (BADBIR). Br J Dermatol. 2023 May 25:ljad179. doi: 10.1093/bjd/ljad179. Epub ahead of print.

4. Alabas OA, Mason KJ, Yiu ZZN, Hampton PJ, Reynolds NJ, Owen CM, Bewley A, Laws PM, Warren RB, Lunt M, Smith CH, Griffiths CEM; BADBIR Study Group. Effectiveness and persistence of acitretin, ciclosporin, fumaric acid esters and methotrexate for patients with moderate-to-severe psoriasis: a cohort study from BADBIR. Br J Dermatol. 2023 Apr 20;188(5):618-627. 

5. Tillett W, Ogdie A, Passey A, Gorecki P. Impact of psoriatic arthritis and comorbidities on ustekinumab outcomes in psoriasis: a retrospective, observational BADBIR cohort study. RMD Open. 2023 Jan;9(1):e002533. 

6. Yiu ZZ, Becher G, Kirby B, Laws P, Reynolds NJ, Smith CH, Warren RB, Griffiths CE, Browne F, Evans I, Kleyn E. Drug survival associated with effectiveness and safety of treatment with guselkumab, ixekizumab, secukinumab, ustekinumab, and adalimumab in patients with psoriasis. JAMA dermatology. 2022 Oct 1;158(10):1131-41.

7. Douroudis K, Ramessur R, Barbosa IA, Baudry D, Duckworth M, Angit C, Capon F, Chung R, Curtis CJ, Di Meglio P, Goulding JMR, Griffiths CEM, Lee SH, Mahil SK, Parslew R, Reynolds NJ, Shipman AR, Warren RB, Yiu ZZN, Simpson MA, Barker JN, Dand N, Smith CH; BADBIR; BSTOP Study Groups. Differences in Clinical Features and Comorbid Burden between HLA-C∗06:02 Carrier Groups in >9,000 People with Psoriasis. J Invest Dermatol. 2022 Jun;142(6):1617-1628.e10.

8. Jalali-Najafabadi F, Stadler M, Dand N, Jadon D, Soomro M, Ho P, Marzo-Ortega H, Helliwell P, Korendowych E, Simpson MA, Packham J. Application of information theoretic feature selection and machine learning methods for the development of genetic risk prediction models. Scientific reports. 2021 Dec 2;11(1):1-4.

9. Geifman N, Azadbakht N, Zeng J, Wilkinson T, Dand N, Buchan I, Stocken D, Di Meglio P, Warren RB, Barker JN, Reynolds NJ, Barnes MR, Smith CH, Griffiths CEM, Peek N; BADBIR Study Group, on behalf of the PSORT Consortium. Defining trajectories of response in patients with psoriasis treated with biologic therapies. Br J Dermatol. 2021 Oct;185(4):825-835.

10. Mason KJ, Burden AD, Barker JNWN, Lunt M, Ali H, Kleyn CE, McElhone K, Soliman MM, Green AC, Griffiths CEM, Reynolds NJ, Ormerod AD; BADBIR Study Group. Risks of basal cell and squamous cell carcinoma in psoriasis patients after treatment with biologic vs non-biologic systemic therapies. J Eur Acad Dermatol Venereol. 2021 Aug;35(8):e496-e498.

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