Swedish Multiple Sclerosis Registry (Sweden)

Database Contact Data

Prof. Jan Hillert
Karolinska University Hospital
17176 Stockholm
Email: jan.hillert@ki.se

Alternate Contact

1. Anna Cunningham (Multiple Sclerosis)
Email: anna.cunningham@regionstockholm.se

2. Email - info@neuroreg.se

References of Studies Using/Describing Database

1. Karrenbauer VD, Bedri SK, Hillert J, Manouchehrinia A. Cerebrospinal fluid oligoclonal immunoglobulin gamma bands and long-term disability progression in multiple sclerosis: a retrospective cohort study. Sci Rep. 2021 Jul 22;11(1):14987. 

2. Spelman T, Forsberg L, McKay K, Glaser A, Hillert J. Increased rate of hospitalisation for COVID-19 among rituximab-treated multiple sclerosis patients: A study of the Swedish multiple sclerosis registry. Mult Scler. 2022 Jun;28(7):1051-1059. 

3. Benkert P, Meier S, Schaedelin S, Manouchehrinia A, Yaldizli Ö, Maceski A, Oechtering J, Achtnichts L, Conen D, Derfuss T, Lalive PH, Mueller C, Müller S, Naegelin Y, Oksenberg JR, Pot C, Salmen A, Willemse E, Kockum I, Blennow K, Zetterberg H, Gobbi C, Kappos L, Wiendl H, Berger K, Sormani MP, Granziera C, Piehl F, Leppert D, Kuhle J; NfL Reference Database in the Swiss Multiple Sclerosis Cohort Study Group. Serum neurofilament light chain for individual prognostication of disease activity in people with multiple sclerosis: a retrospective modelling and validation study. Lancet Neurol. 2022 Mar;21(3):246-257.

4. McKay KA, Bedri SK, Manouchehrinia A, Stawiarz L, Olsson T, Hillert J, Fink K. Reduction in Cognitive Processing Speed Surrounding Multiple Sclerosis Relapse. Ann Neurol. 2022 Mar;91(3):417-423. 

5. Hillert J, Tsai JA, Nouhi M, Glaser A, Spelman T. A comparative study of teriflunomide and dimethyl fumarate within the Swedish MS Registry. Mult Scler. 2022 Feb;28(2):237-246.

6. Teljas C, Boström I, Marrie RA, Landtblom AM, Manouchehrinia A, Hillert J, McKay KA. Validating the diagnosis of multiple sclerosis using Swedish administrative data in Värmland County. Acta Neurol Scand. 2021 Dec;144(6):680-686.

7. Johansson K, Schalling E, Hartelius L. Self-Reported Changes in Cognition, Communication and Swallowing in Multiple Sclerosis: Data from the Swedish Multiple Sclerosis Registry and from a National Survey. Folia Phoniatr Logop. 2021;73(1):50-62.

8. Manouchehrinia A, Kingwell E, Zhu F, Tremlett H, Hillert J, Ramanujam R. A multiple sclerosis disease progression measure based on cumulative disability. Mult Scler. 2021 Oct;27(12):1875-1883. 

9. lping P, Burman J, Lycke J, Frisell T, Piehl F. Safety of Alemtuzumab and Autologous Hematopoietic Stem Cell Transplantation Compared to Noninduction Therapies for Multiple Sclerosis. Neurology. 2021 Mar 16;96(11):e1574-e1584.

10. Smith KA, Burkill S, Hiyoshi A, Olsson T, Bahmanyar S, Wormser D, Geissbühler Y, Moore A, Kharat V, Montgomery S. Comorbid disease burden among MS patients 1968-2012: A Swedish register-based cohort study. Mult Scler. 2021 Feb;27(2):268-280.

Cerner Enviza Cancerology (France)

Database Contact Data

Patricia Medina
Cerner Enviza
Email: Patricia.Medina@cernerenviza.com

Alternate Contact

Cécile Pacheco
Cerner Enviza
Email: Cecile.Pacheco@cernerenviza.com

References of Studies Using/Describing Database

1. E. Manna, K. Kikuchi , H. Chalubert , I. Amri, P. Medina. BRAF mutation testing and results among French patients with solid tumours. Poster presented at ESMO 2020.

2. Bassila L, Medina P, Chalubert H. Trends in anti-emetic drug use in hematology-oncology based on Cancerology data in France. Poster presented at ISPOR US 2020.

3. Chabernaud H, Descoins S, Flinois A, Real-world studies in Onco-hematology: which parameter should be used to measure the efficacy of  treatments, poster presented at ISPOR EU 2019.

4. Medina P, Chalubert H, Pezic N, Wiegand J, Brihaye H, Spitzer M. PCN147 Epidemiologic burden of pulmonary metastasis in France. Value in Health. 2019 May 1;22:S84.

5. Colomer R, Hall P, Szkultecka-Debek M, Bondi RC, Flinois A, Auziere S, Le Cléac'h JY. Real-world treatment in patients with HER2+ metastatic breast cancer: Treatment decisions in HER2+ mBC. Breast Cancer Res Treat. 2018 Feb;168(1):197-205. 

6. Klein AB, Wang H, Shire N, Chalubert H, Alessandrini ER, Descoins S, Medina P. Treatment Patterns In Head & Neck Squamous Cell Cancer In France: Artiste Study on Cancerology Patient Charts. Value in Health. 2017 Oct 1;20(9):A419.

7. Chabernaud H, Bonnelye G, Flinois A, French physician sensitivity to and consideration of the costs of cancer treatment, poster presented at ISPOR EU 2015.

8. Flinois A, Bonnelye G, Chabernaud H, Evolution of the number of patients treated for metastatic cancer between 2003 and 2013 in France, poster presented at ISPOR EU 2015.

Japan Nurses’ Health Study (Japan)

Database Contact Data

Principal Investigator - 
Kunihiko Hayashi, PhD
Executive Director of Education and Evaluation 
Vice-President, Gunma University
4-2 Aramaki
Gunma 371-8510
Tel: (+81) 27-220-7112
Fax: (+81) 27-220-7535 
Email: khayashi@gunma-u.ac.jp 

Alternate Contact

Email: jnhs.jimu@gmail.com

References of Studies Using/Describing Database

1. Yasui T, Ideno Y, Shinozaki H, Kitahara Y, Nagai K, Hayashi K. Prevalence of the Use of Oral Contraceptives and Hormone Replacement Therapy in Japan: The Japan Nurses' Health Study. J Epidemiol. 2022 Mar 5;32(3):117-124.

2. Katanoda K, Ideno Y, Maruoka N, Nagai K, Tsukada Y, Matsuki M, Higashi T, Hayashi K. Validation of Identifying Cancer Diagnosis Based on Self-Reported Information in the Japan Nurses' Health Study. Asian Pac J Cancer Prev. 2022 Feb 1;23(2):651-657.

3. Nagai K, Homma Y, Ideno Y, Hayashi K. Prevalence and factors associated with overactive bladder and stress urinary incontinence in the Japan Nurses' Health Study. Menopause. 2021 Dec 13;29(2):129-136.

4. Ri M, Hayashi K, Kurabayashi T, Lee JS, Ideno Y, Nagai K, Yasui T, Kubota T, Takamatsu K. Hypertensive disorders of pregnancy increase the risk of future menopausal hot flashes in Japanese women: results from the Japan Nurses' Health Study. Menopause. 2021 Oct 25;29(2):164-169.

5. Kurabayashi T, Mizunuma H, Kubota T, Nagai K, Hayashi K. Low birth weight and prematurity are associated with hypertensive disorder of pregnancy in later life: a cross-sectional study in Japan. Am J Perinatol. 2021 Aug;38(10):1096-102.

6. Takamatsu K, Ideno Y, Kikuchi M, Yasui T, Maruoka N, Nagai K, Hayashi K. Validity of self-reported diagnoses of gynaecological and breast cancers in a prospective cohort study: the Japan Nurses' Health Study. BMJ Open. 2021 Jun 18;11(6):e045491.

7. Taguchi A, Nagai K, Ideno Y, Kurabayashi T, Hayashi K. Parity and number of teeth present in Japanese women: Results from the Japan Nurses’ Health Study. Women’s Health Reports 2020 Dec; 1(1): 366-74.

8. Ito A, Hayashi K, Suzuki S, Ideno Y, Kurabayashi T, Ogata T, Seichi A, Akai M, Iwaya T. Association of trajectory of body mass index with knee pain risk in Japanese middle-aged women in a prospective cohort study: The Japan Nurses’ Health Study. BMJ Open 2020 Feb; 10: e033853.

9. Katanoda K, Noda M, Goto A, Mizunuma H, Lee JS, Hayashi K. Being underweight in adolescence is independently associated with adult-onset diabetes among women: The Japan Nurses' Health Study. J Diabetes Investig. 2019 May;10(3):827-836.

10. Alkebsi L, Ohnishi H, Nakajima-Shimada J, Onizuka Y, Ideno Y, Sato Y, Hayashi K. Validation of the Accuracy of Self-Reported ABO Blood Types in the Japan Nurses’ Health Study. Asian Pac J Cancer Prev. 2019 Mar 26;20(3):789-793.

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