Nov 30, 2023: New Nordic Biobank profiles added & Special Offer through December 2023

- The Swedish Rheumatology Quality Register (SRQ) is a national quality register with the aim of continuously improving the treatment and follow-up of patients with rheumatic diseases. SRQ was started in 1996, mainly for patients with RA, but over time it has been expanded to cover several other rheumatic diseases including ankylosing spondylitis (AS) and psoriatic arthritis (PsA), myositis, systemic lupus erythematosus (SLE) and additional conditions.

Norwegian Multiple Sclerosis Registry & Biobank (Norway) **

Database Contact Data

Kjell-Morten Myhr
Email: kjell-morten.myhr@helse-bergen.no
Phone: +47 55975045

Alternate Contact

Stig Wergeland, Ph.D.
Head of the Norwegian MS-registry and biobank
Phone: (+47) 55 97 60 30
Email: stig.wergeland@helse-bergen.no

References of Studies Using/Describing Database

1. König M, Lorentzen ÅR, Torgauten HM, Tran TT, Schikora-Rustad S, Vaage EB, Mygland Å, Wergeland S, Aarseth J, Aaberge IAS, Torkildsen Ø, Holmøy T, Berge T, Myhr KM, Harbo HF, Andersen JT, Munthe LA, Søraas A, Celius EG, Vaage JT, Lund-Johansen F, Nygaard GO. Humoral immunity to SARS-CoV-2 mRNA vaccination in multiple sclerosis: the relevance of time since last rituximab infusion and first experience from sporadic revaccinations. J Neurol Neurosurg Psychiatry. 2023 Jan;94(1):19-22.

2. Høglund RAA, Meyer HE, Stigum H, Torkildsen Ø, Grytten N, Holmøy T, Nakken O. Association of Body Mass Index in Adolescence and Young Adulthood and Long-term Risk of Multiple Sclerosis: A Population-Based Study. Neurology. 2021 Dec 7;97(23):e2253-e2261.

3. Grytten N, Myhr KM, Celius EG, Benjaminsen E, Kampman MT, Midgard R, Vatne A, Aarseth JH, Riise T, Torkildsen Ø. Incidence of cancer in multiple sclerosis before and after the treatment era- a registry- based cohort study. Mult Scler Relat Disord. 2021 Oct;55:103209.

4. Ahmad I, Wergeland S, Oveland E, Bø L. A higher proportion of ermin-immunopositive oligodendrocytes in areas of remyelination. PLoS One. 2021 Aug 26;16(8):e0256155.

5. Norborg H, Riise T, Myhr KM, Grytten N, Wergeland S. Real-world discontinuation rate of teriflunomide and dimethyl fumarate in multiple sclerosis. Mult Scler J Exp Transl Clin. 2021 Jun 14;7(2):20552173211022027.

6. Karine Eid, Øivind Fredvik Torkildsen, Jan Aarseth, Heidi Øyen Flemmen, Trygve Holmøy, Åslaug Rudjord Lorentzen, Kjell-Morten Myhr, Trond Riise, Cecilia Simonsen, Cecilie Fredvik Torkildsen, Stig Wergeland, Johannes Sverre Willumsen, Nina Øksendal, Nils Erik Gilhus, Marte-Helene Bjørk. Perinatal Depression and Anxiety in Women With Multiple Sclerosis
A Population-Based Cohort Study. Neurology Jun 2021, 96 (23) e2789-e2800;

7. Torgauten HM, Myhr KM, Wergeland S, Bø L, Aarseth JH, Torkildsen Ø. Safety and efficacy of rituximab as first- and second line treatment in multiple sclerosis - A cohort study. Mult Scler J Exp Transl Clin. 2021 Jan 31;7(1):2055217320973049.

8. Grytten N, Myhr KM, Celius EG, Benjaminsen E, Kampman M, Midgard R, Vatne A, Aarseth JH, Riise T, Torkildsen Ø. Risk of cancer among multiple sclerosis patients, siblings, and population controls: A prospective cohort study. Mult Scler. 2020 Oct;26(12):1569-1580.

9. Willumsen JS, Aarseth JH, Myhr KM, Midgard R. High incidence and prevalence of MS in Møre and Romsdal County, Norway, 1950-2018. Neurol Neuroimmunol Neuroinflamm. 2020 Mar 26;7(3):e713.

10. Cortese M, Riise T, Bjørnevik K, Myhr KM; Multiple Sclerosis Conscript Service Database Study Group. Body size and physical exercise, and the risk of multiple sclerosis. Mult Scler. 2018 Mar;24(3):270-278.

Swedish Rheumatology Quality Register (SRQ) (Sweden) **

Database Contact Data

1. Lotta Blom
National Quality Coordinator
Swedish Rheumatology Quality Register (SRQ)
Enheten för klinisk epidemiologi
Institutet för medicin, Karolinska Institutet
T4:01 Karolinska Universitetssjukhuset Solna
171 76 Stockholm
SWEDEN
Phone: +46 (0)72-254 21 55
Email: ann-charlotte.blom@regionstockholm.se

2. Lotta Ljung
Register Holder
Swedish Rheumatology Quality Register (SRQ)
Enheten för klinisk epidemiologi
Institutet för medicin, Karolinska Institutet
T4:01 Karolinska Universitetssjukhuset Solna
171 76 Stockholm
SWEDEN
Email: lotta.ljung@regionstockholm.se

Alternate Contact

Thomas Bergman
Klinisk epidemiologi, Institutionen för medicin
T4:01 Karolinska Universitetssjukhuset Solna
171 76 Stockholm
SWEDEN
Phone: +46 (0)8-524 815 59
Email: thomas.bergman@ki.se

References of Studies Using/Describing Database

1. Exarchou S, Wallman JK, Di Giuseppe D, Klingberg E, Sigurdardottir V, Wedrén S, Lindström U, Turesson C, Jacobsson LTH, Askling J. The National Prevalence of Clinically Diagnosed Psoriatic Arthritis in Sweden in 2017. J Rheumatol. 2023 Jun;50(6):781-788.

2. Secher AEP, Granath F, Glintborg B, Rom A, Hetland ML, Hellgren K. Risk of pre-eclampsia and impact of disease activity and antirheumatic treatment in women with rheumatoid arthritis, axial spondylarthritis and psoriatic arthritis: a collaborative matched cohort study from Sweden and Denmark. RMD Open. 2022 Nov;8(2):e002445.

3. Barbulescu A, Askling J, Saevarsdottir S, Kim SC, Frisell T. Combined Conventional Synthetic Disease Modifying Therapy vs. Infliximab for Rheumatoid Arthritis: Emulating a Randomized Trial in Observational Data. Clin Pharmacol Ther. 2022 Oct;112(4):836-845.

4. Hellgren K, Secher AE, Glintborg B, Rom AL, Gudbjornsson B, Michelsen B, Granath F, Hetland ML. Pregnancy outcomes in relation to disease activity and anti-rheumatic treatment strategies in women with rheumatoid arthritis: a matched cohort study from Sweden and Denmark. Rheumatology (Oxford). 2022 Aug 30;61(9):3711-3722.

5. Hedenstierna L, Hedström AK, Klareskog L, Di Giuseppe D, Alfredsson L, Askling J, Ernestam S, Saevarsdottir S, Ljung L. Neither low social support nor low decision latitude at work is associated with disease remission among patients with rheumatoid arthritis: results from the Swedish EIRA study. Arthritis Res Ther. 2022 Aug 23;24(1):203.

6. Delcoigne B, Ljung L, Provan SA, Glintborg B, Hetland ML, Grøn KL, Peltomaa R, Relas H, Turesson C, Gudbjornsson B, Michelsen B, Askling J. Short-term, intermediate-term and long-term risks of acute coronary syndrome in cohorts of patients with RA starting biologic DMARDs: results from four Nordic countries. Ann Rheum Dis. 2022 Jun;81(6):789-797.

7. Glintborg B, Lindström U, Giuseppe DD, Provan SA, Gudbjornsson B, Hetland ML, Michelsen B, Wallman JK, Aaltonen K, Hokkanen AM, Nordström D, Jørgensen TS, Hansen RL, Geirsson AJ, Grøn KL, Krogh NS, Askling J, Kristensen LE, Jacobsson LTH; Danish Rheumatology Database (DANBIO), Anti-Rheumatic Therapy in Sweden/Swedish Rheumatology Quality (ARTIS/SRQ), Center for Rheumatology Research (ICEBIO), Finnish Register of Biological Treatment (ROB-FIN), and Norwegian Antirheumatic Drug Register (NOR-DMARD) registries. One-Year Treatment Outcomes of Secukinumab Versus Tumor Necrosis Factor Inhibitors in Spondyloarthritis: Results From Five Nordic Biologic Registries Including More Than 10,000 Treatment Courses. Arthritis Care Res (Hoboken). 2022 May;74(5):748-758.

8. Hellgren K, Ballegaard C, Delcoigne B, Cordtz R, Nordström D, Aaltonen K, Gudbjornsson B, Love TJ, Aarrestad Provan S, Sexton J, Zobbe K, Kristensen LE, Askling J, Dreyer L. Risk of solid cancers overall and by subtypes in patients with psoriatic arthritis treated with TNF inhibitors - a Nordic cohort study. Rheumatology (Oxford). 2021 Aug 2;60(8):3656-3668.

9. Morin M, Hellgren K, Frisell T. Familial aggregation and heritability of ankylosing spondylitis - a Swedish nested case-control study. Rheumatology (Oxford). 2020 Jul 1;59(7):1695-1702.

10. Wagman P, Ahlstrand I, Björk M, Håkansson C. Occupational balance and its association with life satisfaction in men and women with rheumatoid arthritis. Musculoskeletal Care. 2020 Jun;18(2):187-194.

Norwegian Population Register (Norway) **

Database Contact Data

For ways on contacting regarding the National Population Register please visit https://www.skatteetaten.no/en/contact/ (Options include postal mail, phone calls, chats, but no emails.)

Alternate Contact

For ways on contacting regarding the National Population Register please visit https://www.skatteetaten.no/en/contact/ (Options include postal mail, phone calls, chats, but no emails.)

References of Studies Using/Describing Database

1. Åsberg RE, Nilsen M, Hjermstad MJ, Reinertsen KV, Karlsen J, Giskeødegård GF, Reidunsdatter RJ. Norwegian general population normative data for the European Organization for Research and Treatment of Cancer questionnaires: the Quality of Life Questionnaire-Core 30, the Sexual Health Questionnaire QLQ-SHQ22 and the sexual domains of the QLQ-BR23/BR45. Eur J Cancer. 2023 Sep;190:112943.

2. Mansoor SM, Rabben T, Hisdal J, Jørgensen JJ. Eleven-Year Outcomes of a Screening Project for Abdominal Aortic Aneurysm (AAA) in 65-Year-Old Men. Vasc Health Risk Manag. 2023 Jul 17;19:459-467.

3. Aradhya S, Tegunimataka A, Kravdal Ø, Martikainen P, Myrskylä M, Barclay K, Goisis A. Maternal age and the risk of low birthweight and pre-term delivery: a pan-Nordic comparison. Int J Epidemiol. 2023 Feb 8;52(1):156-164.

4. Saeed M, Stene LC, Reisæter AV, Jenssen TG, Tell GS, Tapia G, Joner G, Skrivarhaug T. End-stage renal disease: incidence and prediction by coronary heart disease, and educational level. Follow-up from diagnosis of childhood-onset type 1 diabetes throughout Norway 1973-2017. Ann Epidemiol. 2022 Dec;76:181-187.

5. Skyrud K, Helgeland J, Lindahl AK, Augestad KM. Abdominal surgical trajectories associated with failure to rescue. A nationwide analysis. Int J Qual Health Care. 2022 Nov 17;34(4):mzac084.

6. Skinner MS, Sogstad M. Social and Gender Differences in Informal Caregiving for Sick, Disabled, or Elderly Persons: A Cross-Sectional Study. SAGE Open Nurs. 2022 Oct 9;8:23779608221130585.

7. Wondemu MY, Joranger P, Hermansen Å, Brekke I. Impact of child disability on parental employment and labour income: a quasi-experimental study of parents of children with disabilities in Norway. BMC Public Health. 2022 Sep 24;22(1):1813.

8. Nilsen TS, Gulseth HL, Daae A, Indseth T. Coronavirus immunisation abroad among foreign-born persons in Norway. Tidsskr Nor Laegeforen. 2022 Jun 27;142(10). English, Norwegian.

9. Kiadaliri A, Magnusson K, Turkiewicz A, Dell'Isola A, Runhaar J, Bierma-Zeinstra S, Englund M. Impact of the first wave of the COVID-19 pandemic on healthcare use in osteoarthritis: A population register-based study in Sweden. Osteoarthr Cartil Open. 2022 Jun;4(2):100252.

10. Forster RB, Strandberg RB, Bø Tibballs KL, Nøkleby K, Berg TJ, Iversen T, Hagen TP, Richardsen KR, Cooper J, Sandberg S, Løvaas KF, Nilsen RM, Iversen MM, Jenum AK, Buhl ESS. Cohort profile: Outcomes & Multi-morbidity In Type 2 diabetes (OMIT) - a national registry-based observational cohort with focus on care and treatment of key high-risk groups in Norway. BMJ Open. 2022 May 11;12(5):e054840. 

Finnish Register of Congenital Malformations (Finland) **

Database Contact Data

Dr. Sonja Kiuru-Kuhlefelt
Chief Physician
National Institute for Health and Welfare, Finland (THL)
Information Services
Register of Congenital Malformations
P.O. Box 30
00271 Helsinki
FINLAND
Email: sonja.kiuru-kuhlefelt@thl.fi
Phone: +358 29 524 7524

Alternate Contact

National Institute for Health and Welfare, Finland (THL)
PO Box 30
Mannerheimintie 166
FI-00271 Helsinki
FINLAND
Phone: +358 29 524 6000

References of Studies Using/Describing Database

1. Kinnunen J, Nikkinen H, Keikkala E, Mustaniemi S, Gissler M, Laivuori H, Eriksson JG, Kaaja R, Pouta A, Kajantie E, Vääräsmäki M. Gestational diabetes is associated with the risk of offspring's congenital anomalies: a register-based cohort study. BMC Pregnancy Childbirth. 2023 Oct 3;23(1):708. doi: 10.1186/s12884-023-05996-6. PMID: 37789251; PMCID: PMC10548673.

2. Kjerpeseth LJ, Cesta CE, Furu K, Engeland A, Gissler M, Gulseth HL, Karlstad Ø, Leinonen MK, Pazzagli L, Zoega H, Cohen JM. Metformin Versus Insulin and Risk of Major Congenital Malformations in Pregnancies With Type 2 Diabetes: A Nordic Register-Based Cohort Study. Diabetes Care. 2023 Aug 1;46(8):1556-1564.

3. Claridge H, Tan J, Loane M, Garne E, Barisic I, Cavero-Carbonell C, Dias C, Gatt M, Jordan S, Khoshnood B, Kiuru-Kuhlefelt S, Klungsoyr K, Mokoroa Carollo O, Nelen V, Neville AJ, Pierini A, Randrianaivo H, Rissmann A, Tucker D, de Walle H, Wertelecki W, Morris JK. Ethics and legal requirements for data linkage in 14 European countries for children with congenital anomalies. BMJ Open. 2023 Jul 27;13(7):e071687. doi: 10.1136/bmjopen-2023-071687. PMID: 37500278; PMCID: PMC10387628.

4. Raitio A, Heiskanen S, Syvänen J, Leinonen MK, Kemppainen T, Löyttyniemi E, Ahonen M, Gissler M, Helenius I. Maternal Risk Factors for Congenital Vertebral Anomalies: A Population-Based Study. J Bone Joint Surg Am. 2023 Jul 19;105(14):1087-1092.

5. Cohen JM, Alvestad S, Cesta CE, Bjørk MH, Leinonen MK, Nørgaard M, Einarsdóttir K, Engeland A, Gissler M, Karlstad Ø, Klungsøyr K, Odsbu I, Reutfors J, Selmer RM, Tomson T, Ulrichsen SP, Zoega H, Furu K. Comparative Safety of Antiseizure Medication Monotherapy for Major Malformations. Ann Neurol. 2023 Mar;93(3):551-562.

6. Kuu-Karkku L, Suominen A, Svedström-Oristo AL. Craniofacial microsomia - more than a structural malformation. Orthod Craniofac Res. 2023 Feb;26(1):117-122.

7. Tauriainen A, Raitio A, Tauriainen T, Vanamo K, Sankilampi U, Helenius I, Hyvärinen A. Comparison of three risk stratification scores in gastroschisis neonates: gastroschisis prognostic score, gastroschisis risk stratification index and complex gastroschisis. Pediatr Surg Int. 2022 Oct;38(10):1377-1383.

8. Heiskanen S, Syvänen J, Helenius I, Kemppainen T, Löyttyniemi E, Gissler M, Raitio A. Increasing Prevalence and High Risk of Associated Anomalies in Congenital Vertebral Defects: A Population-based Study. J Pediatr Orthop. 2022 May-Jun 01;42(5):e538-e543.

9. Ellfolk M, Leinonen MK, Gissler M, Kiuru-Kuhlefelt S, Saastamoinen L, Malm H. Second-generation antipsychotic use during pregnancy and risk of congenital malformations. Eur J Clin Pharmacol. 2021 Nov;77(11):1737-1745.

10. Raitio A, Kalliokoski N, Syvänen J, Harju S, Tauriainen A, Hyvärinen A, Gissler M, Helenius I, Sankilampi U. High incidence of inguinal hernias among patients with congenital abdominal wall defects: a population-based case-control study. Eur J Pediatr. 2021 Aug;180(8):2693-2698.

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