Banque Nationale de Données Maladies Rares (BNDMR): French National Registry of Rare Diseases (France)

Database Contact Data

BNDMR - Banque Nationale de Données Maladies Rares
AP-HP 
33 Boulevard de Picpus
75012 Paris
FRANCE
Contact : Solange ROUMENGOUS
Email 1: solange.roumengous@aphp.fr
Email 2: contact@bndmr.fr

Alternate Contact

Alban LERMINE
Email: alban.lermine@aphp.fr 

References of Studies Using/Describing Database

1. Vantyghem MC, Nobécourt E, Vatier C, Bismuth E, Deshuille C, Elarouci N; French Lipodystrophy Reference Network; Jannot AS, Delemer B, Vigouroux C. Lipodystrophy and severe insulin resistance syndrome: epidemiological data from a French national rare diseases registry. Ann Endocrinol (Paris). 2025 Mar 31:101730.

2. Donadille B, Janmaat S, Mosbah H, Belalem I, Lamothe S, Nedelcu M, Jannot AS, Christin-Maitre S, Fève B, Vatier C, Vigouroux C. Diagnostic and referral pathways in patients with rare lipodystrophy and insulin-resistance syndromes: key milestones assessed from a national reference center. Orphanet J Rare Dis. 2024 Apr 27;19(1):177.

3. Angin C, Mazzucato M, Weber S, Kirch K, Abdel Khalek W, Ali H, Maiella S, Olry A, Jannot AS, Rath A. Coding undiagnosed rare disease patients in health information systems: recommendations from the RD-CODE project. Orphanet J Rare Dis. 2024 Jan 27;19(1):28.

4. Mazzucato M, Pozza LV, Facchin P, Angin C, Agius F, Cavero-Carbonell C, Corrochano V, Hanusova K, Kirch K, Lambert D, Lucano C. ORPHAcodes use for the coding of rare diseases: comparison of the accuracy and cross country comparability. Orphanet Journal of Rare Diseases. 2023 Sep 4;18(1):267.

5. Pichon T, Messiaen C, Soussand L, Angin C, Sandrin A, Elarouci N, Jannot AS; BNDMR infrastructure team. Overview of patients' cohorts in the French National rare disease registry. Orphanet J Rare Dis. 2023 Jul 3;18(1):176.

6. Bodemer C, Soussand L, Sandrin A, Khatim A, Sauvestre A, Elarouci N, Jannot AS. French data on the epidemiology and expert healthcare network for epidermolysis bullosa. J Eur Acad Dermatol Venereol. 2023 May;37(5):e597-e599.

7. Soussand L, Kuchenbuch M, Messiaen C, Sandrin A, Jannot AS, Nabbout R. Impact of the COVID-19 pandemic on the care of rare and undiagnosed diseases patients in France: a longitudinal population-based study. Orphanet Journal of Rare Diseases. 2022 Dec 9;17(1):430.

8. Jannot AS, Messiaen C, Khatim A, Pichon T, Sandrin A, BNDMR Infrastructure Team. The ongoing French BaMaRa-BNDMR cohort: implementation and deployment of a nationwide information system on rare disease. Journal of the American Medical Informatics Association. 2022 Mar 1;29(3):553-8.

9. Kallali W, Messiaen C, Saïdi R, Lessim S, Viaud M, Dulon J, Nedelcu M, Samara D, Houang M, Donadille B, Courtillot C, de Filippo G, Carel JC, Christin-Maitre S, Touraine P, Netchine I, Polak M, Léger J. Age at diagnosis in patients with chronic congenital endocrine conditions: a regional cohort study from a reference center for rare diseases. Orphanet J Rare Dis. 2021 Nov 4;16(1):469.

10. Messiaen C, Racine C, Khatim A, Soussand L, Odent S, Lacombe D, Manouvrier S, Edery P, Sigaudy S, Geneviève D, Thauvin-Robinet C, Pasquier L, Petit F, Rossi M, Willems M, Attié-Bitach T, Roux-Levy PH, Demougeot L, Slama LB, Landais P; AnDDI-Rares network; Jannot AS, Binquet C, Sandrin A, Verloes A, Faivre L. 10 years of CEMARA database in the AnDDI-Rares network: a unique resource facilitating research and epidemiology in developmental disorders in France. Orphanet J Rare Dis. 2021 Aug 4;16(1):345.

DeSC Healthcare Database (Japan)

Database Contact Data

DeSC Healthcare, Inc.
RWE Promotion Department
JAPAN
Email: rwe-psales@desc-hc.co.jp

Alternate Contact

N/A

References of Studies Using/Describing Database

1. Kamitani F, Nishioka Y, Koizumi M, Nakajima H, Kurematsu Y, Okada S, Kubo S, Myojin T, Noda T, Imamura T, Takahashi Y. Immune checkpoint inhibitor-related type 1 diabetes incidence, risk, and survival association. J Diabetes Investig. 2025 Feb;16(2):334-342.

2. Masuda S, Fukasawa T, Matsuda S, Kawakami K. Cardiovascular Safety and Fracture Prevention Effectiveness of Denosumab Versus Oral Bisphosphonates in Patients Receiving Dialysis : A Target Trial Emulation. Ann Intern Med. 2025 Feb;178(2):167-176.

3. Inayama Y, Yamaguchi K, Mizuno K, Tanaka-Mizuno S, Koike A, Higashiyama N, Taki M, Yamanoi K, Murakami R, Hamanishi J, Yoshida S, Mandai M, Kawakami K. Changes in Physical Activity Across Cancer Diagnosis and Treatment Based on Smartphone Step Count Data Linked to a Japanese Claims Database: Retrospective Cohort Study. JMIR Cancer. 2025 Jan 20;11:e58093.

4. Tominaga R, Ikenoue T, Ishii R, Niihata K, Aita T, Okuda T, Shimizu S, Taguri M, Kurita N. Comparative cardiovascular safety of romosozumab versus bisphosphonates in Japanese patients with osteoporosis: a new-user, active comparator design with instrumental variable analyses. J Bone Miner Res. 2025 Jan 17:zjaf010. doi: 10.1093/jbmr/zjaf010. Epub ahead of print.

5. Ikeda Y, Yamamoto T, Torigoe M, Casaes Teixeira B, Laurent T. Prevalence, Patient Characteristics, and Treatment of Patients with Hypertrophic Cardiomyopathy: A Nationwide Payer Database Study. Cardiol Ther. 2025 Jan 15. doi: 10.1007/s40119-024-00396-z. Epub ahead of print.

6. Horinouchi H, Chang CS, Shaw J, Archangelidi O, Balasubramanian A, Pundole X. Real-world treatment patterns and survival in extensive stage small-cell lung cancer in Japan. Jpn J Clin Oncol. 2024 Dec 20:hyae175. doi: 10.1093/jjco/hyae175. Epub ahead of print.

7. Satoh M, Nakayama S, Hashimoto H, Toyama M, Iwabe Y, Yagihashi T, Murakami T, Obara T, Ohkubo T, Metoki H. Differential coronary heart disease risk among antihypertensive and lipid-lowering medication users versus non-users: A real-world data analysis. J Clin Lipidol. 2024 Dec 16:S1933-2874(24)00288-5. doi: 10.1016/j.jacl.2024.12.006. Epub ahead of print.

8. Okura T, Tanaka-Mizuno S, Fukasawa T, Yoshida S, Kawakami K. Assessing the Risk of Gastrointestinal Perforation Associated with COVID-19: A Self-Controlled Case Series Study. Am J Epidemiol. 2024 Dec 10:kwae448. doi: 10.1093/aje/kwae448. Epub ahead of print.

9. Matsumura K, Nakagomi A, Yagi E, Yamada N, Funauchi Y, Kakehi K, Yoshida A, Kawamura T, Ueno M, Nakazawa G, Tabuchi T. Impact of an mHealth App (Kencom) on Patients With Untreated Hypertension Initiating Antihypertensive Medications: Real-World Cohort Study. JMIR cardio. 2024 Nov 26;8(1):e52266.

10. Karasawa Y, Nozawa K, Nomoto K, Fukudo S. Constipation among workers with depression/anxiety: a retrospective study using a claims database and survey data in Japan. BMJ Open. 2024 Nov 19;14(11):e083668.

Feb 27, 2025: New Australian Lung Cancer Registry added

Starting in 2011, the Victorian Lung Cancer Registry (VLCR) is a clinical quality registry which collects and reports on data relating to 24 clinical quality indicators (CQIs) from Victoria and Tasmania. Data are reported from 9 participating health services, including 51 hospitals, with the aim of capturing all patients newly diagnosed with a primary lung cancer in stakeholder hospitals.

Feb 26, 2025: The Power of Administrative Databases in Public Health Research

The article "Use of Administrative Medical Databases in Population-Based Research" delves into the potential of administrative databases as robust tools for public health studies. These databases, which compile extensive records from hospitals, health maintenance organizations, and insurance entities, offer a wealth of clinical and demographic information.

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