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 1: stig.wergeland@helse-bergen.no
Email 2: msdata@helse-bergen.no

References of Studies Using/Describing Database

1. Rød BE, Høgestøl EA, Torkildsen Ø, Bjørnevik K, Gran JM, Øverås MH, König M, Myhr KM, Wergeland S, Nygaard GO. Comparative effectiveness of rituximab and cladribine in relapsing-remitting multiple sclerosis: A target trial emulation. Mult Scler. 2025 May 26:13524585251342727.

2. Eid K, Torkildsen Ø, Aarseth J, Cortese M, Holmøy T, Myhr KM, Riise T, Wergeland S, Gilhus NE, Bjørk MH. Migraine in the multiple sclerosis prodrome: a prospective nationwide cohort study in pregnant women. J Headache Pain. 2024 Dec 23;25(1):225.

3. Hillert J, Butzkueven H, Magyari M, Wergeland S, Moore N, Soilu-Hänninen M, Ziemssen T, Kuhle J, Pontieri L, Forsberg L, Aarseth JH, Zhu C, Sicignano N, Mushnikov V, Bezemer I, Sabidó M. Harmonized Data Quality Indicators Maintain Data Quality in Long-Term Safety Studies Using Multiple Sclerosis Registries/Data Sources: Experience from the CLARION Study. Clin Epidemiol. 2024 Oct 17;16:717-732.

4 Nakken O, Aarseth JH, Wergeland S, Stigum H, Meyer HE, Holmøy T. BCG vaccination and multiple sclerosis risk: A Norwegian cohort study. Mult Scler. 2024 May;30(6):646-653.

5. Eid K, Torkildsen Ø, Aarseth J, Cortese M, Holmøy T, Myhr KM, Riise T, Wergeland S, Gilhus NE, Bjørk MH. Migraine in the multiple sclerosis prodrome: a prospective nationwide cohort study in pregnant women. J Headache Pain. 2024 Dec 23;25(1):225.

6. 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.

7. 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.

8. 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.

9. 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.

10. 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.

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

Email: info@srq.nu

References of Studies Using/Describing Database

1. Palsson O, Einarsson JT, Wallman JK, Love TJ, Gudbjornsson B, Kapetanovic MC. Prevalence and predictors of achieving sustained remission in psoriatic arthritis. A Swedish nationwide registry study. J Rheumatol. 2025 May 15:jrheum.2024-1250.

2. Bruze GM, Frisell T, Turesson C, Forsblad-d'Elia H, Soderling J, Askling J, Neovius M; ARTIS Study Group. Work loss in patients with rheumatoid arthritis treated with abatacept, rituximab, tocilizumab or TNF inhibitors: a nationwide direct drug-to-drug comparison. RMD Open. 2025 Jan 29;11(1):e004936.

3. Exarchou S, Di Giuseppe D, Klingberg E, Sigurdardottir V, Wedrén S, Lindström U, Turesson C, Jacobsson LTH, Askling J, Wallman JK. Incidence of Clinically Diagnosed Psoriatic Arthritis in Sweden. J Rheumatol. 2025 Jan 1;52(1):38-46.

4. Waldenlind K, Delcoigne B, Saevarsdottir S, Askling J. Disease-modifying antirheumatic drugs and risk of thyroxine-treated autoimmune thyroid disease in patients with rheumatoid arthritis. J Intern Med. 2024 Mar;295(3):313-321.

5. Cohen JM, Alvestad S, Suarez EA, Schaffer A, Selmer RM, Havard A, Bateman BT, Cesta CE, Zoega H, Odsbu I, Huybrechts KF, Kjerpeseth LJ, Straub L, Leinonen MK, Bjørk MH, Nørgaard M, Gissler M, Ulrichsen SP, Hernandez-Diaz S, Tomson T, Furu K. Comparative Risk of Major Congenital Malformations With Antiseizure Medication Combinations vs Valproate Monotherapy in Pregnancy. Neurology. 2024 Jan 23;102(2):e207996.

6. 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.

7. 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.

8. 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.

9. 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.

10. 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.

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

N/A

References of Studies Using/Describing Database

1. Wyatt S, Skjærven R, Vatten L, Wilcox AJ, Singh A, Klungsøyr K, Carmichael SL, Morken NH, Lie RT, Kvalvik LG. Hypertensive Disorders of Pregnancy, Preterm Delivery, and Infant Size: Which Mothers Have Highest Cardiovascular Disease Mortality? Paediatr Perinat Epidemiol. 2025 Jun 5. doi: 10.1111/ppe.70033. Epub ahead of print.

2. AarØ LE, Knapstad M, Nilsen T, Skogen JC, Nes RB, Leino T, Riise IA, Johansen R, GrØtvedt L, Vedaa Ø, Stigen OT, Reneflot A, Gulseth HL, Klepp KI. The Norwegian Counties Public Health Survey (NCPHS): a design study. Scand J Public Health. 2024 Oct 22:14034948241287853.

3. Boskovic M, Jortveit J, Haraldsen MB, Berge T, Engdahl J, Løchen ML, Schuster P, Sandberg EL, Grimsmo J, Atar D, Anfinsen OG, Pripp AH, Grenne BL, Halvorsen S. The NORwegian atrial fibrillation self-SCREENing (NORSCREEN) trial: rationale and design of a randomized controlled trial. Europace. 2024 Oct 3;26(10):euae228.

4. Nybru Gleditsch R, Skogset Ofitserova T, Aubrey White R, Karoline Råberg Kjøllesdal M, Dvergsdal E, Hansen BT, Askeland Winje B. Vaccine coverage among children born to immigrant parents in Norway, 2000-2020. Vaccine. 2024 Apr 30;42(12):3049-3056.

5. Sigmo GD, Hauge S, Hufthammer KO, Wallenius M, Salvesen KÅ, Daltveit AKN, Bakland G, Fevang BS. Male patients with inflammatory joint diseases are less likely than controls to be childless: results from a Norwegian population-based cohort study of 10 865 patients. Ann Rheum Dis. 2024 Mar 12;83(4):457-463.

6. Wyatt S, Kvalvik LG, Singh A, Klungsøyr K, Østbye T, Skjærven R. Heterogeneity in the risk of cardiovascular disease mortality after the hypertensive disorders of pregnancy across mothers' lifetime reproductive history. Paediatr Perinat Epidemiol. 2024 Mar;38(3):230-237.

7. Aarø LE, Ohm E, Skogen JC, Nilsen T, Knapstad M, Vedaa Ø, Nes RB, Clarsen B, Klepp KI. A cross-sectional study of the relationship between injuries and quality of life, psychological distress, sleeping problems, and global subjective health in adults from three Norwegian counties. Health Qual Life Outcomes. 2023 Nov 3;21(1):120.

8. Lerdal A, Gay C, Bonsaksen T, Ekeberg Ø, Grimholt T, Heir T, Kottorp A, Lee KA, Skogstad L, Schou-Bredal I. Validation of a short version of the Lee fatigue scale in adults living in Norway: a cross-sectional population survey. BMC Public Health. 2023 Oct 31;23(1):2132.

9. 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.

10. 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.

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. Björkstedt SM, Koponen H, Kautiainen H, Gissler M M, Pennanen P, Eriksson JG, Laine MK. Maternal mental disorders, psychotropic drugs, socioeconomic status, and offspring congenital anomalies. J Int Med Res. 2025 Jan;53(1):3000605241306902.

2. Elfving P, Kariniemi S, Kautiainen H, Rantalaiho V, Virta LJ, Puolakka K, Laine MK. Pregnancies in patients with systemic lupus erythematosus during 2000-2018 in Finland: a case-control study. Rheumatol Int. 2024 Jun;44(6):1101-1109.

3. Heiskanen S, Helenius I, Syvänen J, Kemppainen T, Löyttyniemi E, Ahonen M, Gissler M, Raitio A. Maternal risk factors for congenital vertebral formation and mixed defects: A population-based case-control study. J Child Orthop. 2024 Mar 20;18(3):340-345.

4. Leppänen M, Pape B, Ripatti L, Karukivi M, Haataja L, Rautava P. Burden of mental, behavioral, and neurodevelopmental disorders in the Finnish most preterm children: a national register study. Eur Child Adolesc Psychiatry. 2024 Feb;33(2):431-438.

5. Cohen JM, Alvestad S, Suarez EA, Schaffer A, Selmer RM, Havard A, Bateman BT, Cesta CE, Zoega H, Odsbu I, Huybrechts KF, Kjerpeseth LJ, Straub L, Leinonen MK, Bjørk MH, Nørgaard M, Gissler M, Ulrichsen SP, Hernandez-Diaz S, Tomson T, Furu K. Comparative Risk of Major Congenital Malformations With Antiseizure Medication Combinations vs Valproate Monotherapy in Pregnancy. Neurology. 2024 Jan 23;102(2):e207996.

6. 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.

7. 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.

8. 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.

9. 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.

10. 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.

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