Feb 9, 2023: Our 14th profile from Sweden has been uploaded

The Registry for Monitoring Fetal Damage and Chromosomal Abnormalities contains information on birth defects since 1964. Data from the Swedish Medical Birth Register are available since 1973, and data from the Swedish Patient Register are available since 1987. This specific register contains information on newborns, live births and stillborn children, who have a gestational age of at least 22 completed weeks of pregnancy and who have congenital malformations, deformities and chromosomal abnormalities.

Registry for Monitoring Fetal Damage and Chromosomal Abnormalities (Sweden)

Database Contact Data

Carina Gustafsson
Programme Officer, Phd
SOCIALSTYRELSEN
The National Board of Health and Welfare
Department of Registers and Statistics 
SE-106 30 Stockholm
SWEDEN
Phone: +46 75 247 30 00
Email: carina.gustafsson@socialstyrelsen.se

Alternate Contact

Mona Heurgren
SOCIALSTYRELSEN
The National Board of Health and Welfare
Department of Registers and statistics 
SE-106 30 Stockholm
SWEDEN
Email: mona.heurgren@socialstyrelsen.se

References of Studies Using/Describing Database

1. Nikkilä A, Källén B, Marsál K. Fetal growth and congenital malformations. Ultrasound Obstet Gynecol. 2007 Mar;29(3):289-95. 

2. Wennerholm UB, Bergh C, Hamberger L, Lundin K, Nilsson L, Wikland M, Källén B. Incidence of congenital malformations in children born after ICSI. Hum Reprod. 2000 Apr;15(4):944-8.

3. Kälién B, Robert E, Harris J. Associated malformations in infants and fetuses with upper or lower neural tube defects. Teratology. 1998 Feb;57(2):56-63.

4. Milerad J, Larson O, Hagberg C, Ideberg M. Associated malformations in infants with cleft lip and palate: a prospective, population-based study. Pediatrics. 1997 Aug;100(2 Pt 1):180-6.

5. Pradat P. Noncardiac malformations at major congenital heart defects. Pediatr Cardiol. 1997 Jan-Feb;18(1):11-8

6. Källén B, Harris J, Robert E. The epidemiology of orofacial clefts. 2. Associated malformations. J Craniofac Genet Dev Biol. 1996 Oct-Dec;16(4):242-8.

7. Pradat P. Epidemiology of major congenital heart defects in Sweden, 1981-1986. J Epidemiol Community Health. 1992 Jun;46(3):211-5.

8. Pradat P, Robert E. Is trisomy 18 increasing in Sweden? An analysis of the syndrome during a ten year period and a comparison with a French registry. Hereditas. 1991;114(1):97-102. 

9. Goel N, Morris JK, Tucker D, de Walle HEK, Bakker MK, Kancherla V, Marengo L, Canfield MA, Kallen K, Lelong N, Camelo JL, Stallings EB, Jones AM, Nance A, Huynh MP, Martínez-Fernández ML, Sipek A, Pierini A, Nembhard WN, Goetz D, Rissmann A, Groisman B, Luna-Muñoz L, Szabova E, Lapchenko S, Zarante I, Hurtado-Villa P, Martinez LE, Tagliabue G, Landau D, Gatt M, Dastgiri S, Morgan M. Trisomy 13 and 18-Prevalence and mortality-A multi-registry population based analysis. Am J Med Genet A. 2019 Dec;179(12):2382-2392.

10. Sabeti Rad Z, Friberg B, Henic E, Rylander L, Ståhl O, Källén B, Lingman G. Congenital malformations in offspring of women with a history of malignancy. Birth Defects Res. 2017 Feb 15;109(3):224-233. 

Feb 7, 2023: Our latest profile addition from Estonia

With data since 1987, the Estonian Tuberculosis (TB) Register is a population-based, centralized national register with standardized registration of all TB cases in Estonia. This TB Register is an electronic, person-based one with unique personal Estonian ID-codes, linking data with the Estonian Population Register, TB reference laboratory database, and Causes of Death Register. All data are cross-checked with health care providers.

Estonian Tuberculosis Register (Estonia)

Database Contact Data

Estonian Tuberculosis Register
National Institute for Health Development
Hiiu 42
Tallinn 11619
ESTONIA
Email: tuberkuloosiregister@tai.ee
Phone: +372 659 39 17

Alternate Contact

Email: tai@tai.ee
Phone: +372 659 39 00

References of Studies Using/Describing Database

1. Campbell JR, Chan ED, Falzon D, Trajman A, Keshavjee S, Leung CC, Miller AC, Monedero-Recuero I, Rodrigues DS, Seo H, Baghaei P, Udwadia Z, Viiklepp P, Bastos M, Menzies D. Low Body Mass Index at Treatment Initiation and Rifampicin-Resistant Tuberculosis Treatment Outcomes: An Individual Participant Data Meta-Analysis. Clin Infect Dis. 2022 Dec 19;75(12):2201-2210.

2. Cegielski JP, Chan PC, Lan Z, Udwadia ZF, Viiklepp P, Yim JJ, Menzies D. Aminoglycosides and Capreomycin in the Treatment of Multidrug-resistant Tuberculosis: Individual Patient Data Meta-analysis of 12 030 Patients From 25 Countries, 2009-2016. Clin Infect Dis. 2021 Dec 6;73(11):e3929-e3936.

3. Rahu K, Viiklepp P, Villand K, Pehme L, Rahu M. Respiratory tuberculosis incidence and mortality in Estonia: 30-year trends and sociodemographic determinants. Int J Tuberc Lung Dis. 2019 Jan 1;23(1):112-118.

4. Blöndal K, Rahu K, Altraja A, Viiklepp P, Rahu M. Overall and cause-specific mortality among patients with tuberculosis and multidrug-resistant tuberculosis. Int J Tuberc Lung Dis. 2013 Jul;17(7):961-8.

Icelandic Hospital Discharge Register (Iceland)

Database Contact Data

Arna Harðardóttir
Specialist, Health Information
Directorate of Health
Katrínartún 2
IS-105 Reykjavík
ICELAND
Phone: +354 510 1900
Email: arna.hardardottir@landlaeknir.is

Alternate Contact

N/A

References of Studies Using/Describing Database

Extensive use of data from the registry; recent studies being conducted with the focus on COVID19, but no references yet.

Malta National Cancer Registry (MNCR) (Malta)

Database Contact Data

Dr. Miriam Azzopardi
Consultant Public Health Medicine
Department for Policy in Health
Health Information and Research
Email: miriam.j.azzopardi@gov.mt
Phone: +356 25599208

Alternate Contact

Ms. Rita Micallef
Email: rita.t.micallef@gov.mt

References of Studies Using/Describing Database

1. Mercieca L, Aquilina S, Calleja N, Boffa MJ. Cutaneous Melanoma More Likely to Be Invasive in Fairer Skin Phototypes: A Retrospective Observational Study. Skinmed. 2021 Aug 1;19(4):280-283.

​2. Cuschieri S, Pallari E, Terzic N, Alkerwi A, Sigurvinsdottir R, Sigfusdottir ID, Devleesschauwer B. Conducting national burden of disease studies in small countries in Europe- a feasible challenge? Arch Public Health. 2021 May 11;79(1):73.

3. Fidler MM, Bray F, Vaccarella S, Soerjomataram I. Assessing global transitions in human development and colorectal cancer incidence. Int J Cancer. 2017 Jun 15;140(12):2709-2715.

4. Gauci D, Allemani C, Woods L. Population-level cure of colorectal cancer in Malta: An analysis of patients diagnosed between 1995 and 2004. Cancer Epidemiol. 2016 Jun;42:32-8. 

5. Gauci D, Woods L. Trends in survival of colorectal cancer in Malta for patients diagnosed from 1995 to 2009 followed up to 2010. Eur J Public Health, Volume 24, Issue suppl_2, October 2014, cku165-078 (https://doi.org/10.1093/eurpub/cku165.078)

6. Znaor A, van den Hurk C, Primic-Zakelj M, Agius D, Coza D, Demetriou A, Dimitrova N, Eser S, Karakilinc H, Zivkovic S, Bray F, Coebergh JW. Cancer incidence and mortality patterns in South Eastern Europe in the last decade: gaps persist compared with the rest of Europe. Eur J Cancer. 2013 May;49(7):1683-91.

Malta Rare Disease Register (Malta)

Database Contact Data

Dr. Francis Agius
Health Information & Research
95, G'Mangia Hill
G'Mangia, PTA 1313 
MALTA
Email: francis.agius@gov.mt
Phone 1: +356 2559 9341
Phone 2: +356 2559 9000

Alternate Contact

Email: healthinfo@gov.mt

References of Studies Using/Describing Database

There are no publications to date. Please contact database manager for any abstracts, posters, or other reports.

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