Aug 11, 2022 – Our 20th Japanese profile has just been uploaded

The National Cancer Registry (NCR) commenced operations in January 2016. Accurate nationwide data obtained from NCR contribute to the planning and evaluation of cancer control in Japan. This database is utilized in evaluating the quality of medical care for cancer patients, in assessing the accuracy of cancer screening, and in follow-up surveys in nationwide cohort studies.

National Cancer Registry (Japan)

Database Contact Data

Please complete the contact form (in Japanese or English) at -https://reg18.smp.ne.jp/regist/is?SMPFORM=ndqe-lfogsa-3b8c6f3d580c85ee376b1c4fd94627fa

Alternate Contact

N/A

References of Studies Using/Describing Database

1. Makiuchi T, Sobue T. Descriptive epidemiology of biliary tract cancer incidence and geographic variation in Japan. Eur J Cancer Prev. 2022 Apr 26. doi: 10.1097/CEJ.0000000000000758. Epub ahead of print. PMID: 35485392.

2. Satake, T., Morizane, C., Rikitake, R., Iwata, S., Hirano, H., Ogata, D., ... & Kawai, A. (2022). O12-2 The epidemiology of rare cancers from National Cancer Registry in Japan. Annals of Oncology, 33, S473-S474.

3. Kobayashi N, Oike T, Kubo N, Miyasaka Y, Mizukami T, Sato H, Adachi A, Katoh H, Kawamura H, Ohno T. Colorectal Cancer Screening Outcomes of 2412 Prostate Cancer Patients Considered for Carbon Ion Radiotherapy. Cancers (Basel). 2021 Sep 6;13(17):4481.

4. Okuyama A, Tsukada Y, Higashi T. Coverage of the hospital-based cancer registries and the designated cancer care hospitals in Japan. Jpn J Clin Oncol. 2021 May 28;51(6):992-998. 

5. Yoshida M, Yabuuchi Y, Kakushima N, Kato M, Iguchi M, Yamamoto Y, Kanetaka K, Uraoka T, Fujishiro M, Sho M; Japan Duodenal Cancer Guideline Committee. The incidence of non-ampullary duodenal cancer in Japan: The first analysis of a national cancer registry. J Gastroenterol Hepatol. 2021 May;36(5):1216-1221.

6. Harashima S, Fujimori M, Akechi T, Matsuda T, Saika K, Hasegawa T, Inoue K, Yoshiuchi K, Miyashiro I, Uchitomi Y, J Matsuoka Y. Death by suicide, other externally caused injuries and cardiovascular diseases within 6 months of cancer diagnosis (J-SUPPORT 1902). Jpn J Clin Oncol. 2021 Apr 30;51(5):744-752.

7. Takahashi H, Takahashi K, Shimura H, Yasumura S, Suzuki S, Ohtsuru A, Midorikawa S, Ohira T, Ohto H, Yamashita S, Kamiya K. Simulation of expected childhood and adolescent thyroid cancer cases in Japan using a cancer-progression model based on the National Cancer Registry: Application to the first-round thyroid examination of the Fukushima Health Management Survey. Medicine (Baltimore). 2017 Dec;96(48):e8631.
 

Swedish Multiple Sclerosis Registry (Sweden) **

Database Contact Data

Prof. Jan Hillert
Karolinska University Hospital
17176 Stockholm
SWEDEN
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.

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