7/9/18: Our 10th Spanish database profile has been added
The Spanish Rare Diseases Patient Registry [Registro Nacional de Enfermedades Raras] is a registry of national scope which collects information on all persons diagnosed with any disease considered to be rare or of low prevalence. The objectives of the registry are to:
- Provide necessary information to contribute to the development of new treatments and to the prevention, diagnosis, prognosis and quality of life of rare disease patients and their families;
Spanish Rare Diseases Patient Registry [Registro de Pacientes de Enfermedades Raras] (Spain)
Database Contact Data
Verónica Alonso, PhD
Institute of Rare Diseases Research (IIER)
Instituto de Salud Carlos III
C/Monforte de Lemos 5
28029 Madrid
SPAIN
Email: valonso@isciii.es
Alternate Contact
Ana Cabonero / Snow Bald
Email 1: registry.raras@isciii.es
Email 2: registro.raras@isciii.es
References of Studies Using/Describing Database
1. Gallego E, Arias-Merino G, Sánchez-Díaz G, Villaverde-Hueso A, Posada de la Paz M, Alonso-Ferreira V. Familial Mediterranean Fever in Spain: Time Trend and Spatial Distribution of the Hospitalizations. Int J Environ Res Public Health. 2023 Feb 28;20(5):4374.
2. Benito-Lozano J, López-Villalba B, Arias-Merino G, Posada de la Paz M, Alonso-Ferreira V. Diagnostic delay in rare diseases: data from the Spanish rare diseases patient registry. Orphanet J Rare Dis. 2022 Nov 17;17(1):418.
3. Garrido-Estepa M, Arias-Merino G, Alonso-Ferreira V, Villaverde-Hueso A, Posada de la Paz M. The impact of toxic oil syndrome on physical and psychological health status using the HAQ and the PHQ-9 questionnaires. Qual Life Res. 2022 Oct;31(10):2995-3008.
4. Benito-Lozano J, Arias-Merino G, Gómez-Martínez M, Ancochea-Díaz A, Aparicio-García A, Posada de la Paz M, Alonso-Ferreira V. Diagnostic Process in Rare Diseases: Determinants Associated with Diagnostic Delay. Int J Environ Res Public Health. 2022 May 26;19(11):6456.
5. Posada de la Paz M, Díaz-Guerra E, Alonso-Ferreira V, Villaverde-Hueso A, Arias-Merino G, Garrido-Estepa M. Toxic oil syndrome: health-related quality-of-life assessment using the SF-36 Health Survey. Int J Epidemiol. 2022 May 9;51(2):491-500.
6. Kodra Y, Weinbach J, Posada-de-la-Paz M, Coi A, Lemonnier SL, van Enckevort D, Roos M, Jacobsen A, Cornet R, Ahmed SF, Bros-Facer V, Popa V, Van Meel M, Renault D, von Gizycki R, Santoro M, Landais P, Torreri P, Carta C, Mascalzoni D, Gainotti S, Lopez E, Ambrosini A, Müller H, Reis R, Bianchi F, Rubinstein YR, Lochmüller H, Taruscio D. Recommendations for Improving the Quality of Rare Disease Registries. Int J Environ Res Public Health. 2018 Aug 3;15(8):1644.
7. Gainotti S, Torreri P, Wang CM, Reihs R, Mueller H, Heslop E, Roos M, Badowska DM, de Paulis F, Kodra Y, Carta C, Martìn EL, Miller VR, Filocamo M, Mora M, Thompson M, Rubinstein Y, Posada de la Paz M, Monaco L, Lochmüller H, Taruscio D. The RD-Connect Registry & Biobank Finder: a tool for sharing aggregated data and metadata among rare disease researchers. Eur J Hum Genet. 2018 May;26(5):631-643.
8. Kodra Y, Posada de la Paz M, Coi A, Santoro M, Bianchi F, Ahmed F, Rubinstein YR, Weinbach J, Taruscio D. Data Quality in Rare Diseases Registries. Adv Exp Med Biol. 2017;1031:149-164.
9. Rubinstein YR, Posada de la Paz M, Mora M. Rare Disease Biospecimens and Patient Registries: Interoperability for Research Promotion, a European Example: EuroBioBank and SpainRDR-BioNER. Adv Exp Med Biol. 2017;1031:141-147.
10. Sernadela P, González-Castro L, Carta C, van der Horst E, Lopes P, Kaliyaperumal R, Thompson M, Thompson R, Queralt-Rosinach N, Lopez E, Wood L, Robertson A, Lamanna C, Gilling M, Orth M, Merino-Martinez R, Posada M, Taruscio D, Lochmüller H, Robinson P, Roos M, Oliveira JL. Linked Registries: Connecting Rare Diseases Patient Registries through a Semantic Web Layer. Biomed Res Int. 2017;2017:8327980.
5/2/18: New database profile from the US
CancerMPact® is an international cancer registry that includes published epidemiology studies in the USA, Japan, and Western Europe. Cancer patient data are obtained from clinician surveys. This resource is composed of web-based integrated modules: Patient Metrics (Patient Metrics – G7, Patient Metrics – China, Patient Metrics – Expanded Markets and Biomarker Analysis) and Treatment Practices and Evolution (Treatment Architecture and Future Trends and Insights).
Oracle Life Sciences CancerMPact® (USA)
Database Contact Data
Stephanie Hawthorne
Oracle Life Sciences
Email: stephanie.hawthorne@oracle.com
Alternate Contact
1. Haris Vikis
Oracle Life Sciences
Email: haris.vikis@oracle.com
2. If you cannot reach the database manager, you may contact the company by completing the contact form at: https://www.cernerenviza.com/contact-us
References of Studies Using/Describing Database
1. Zhu X, Durbin L, Kanas G, Phiri K, Keeven K, Clark O, Nersesyan K, Aziez A, Stojadinovic A, Bell KF. Metastatic non-small-cell lung cancer without driver mutations: projections by therapy line in Western Europe, 2021-2026. Future Oncol. 2023 Aug 2. doi: 10.2217/fon-2023-0063. Epub ahead of print.
2. A Bueno AP, Clark O, Turnure M, Moreira ES, Chang J, Hou N, Li S, Kim R, Kearney M, Kirker M, Kanas G. Physician reported treatment patterns and outcomes in metastatic bladder cancer in the USA: the CancerMPact® Survey 2020. Future Oncol. 2023 Jun 26. doi: 10.2217/fon-2022-1066. Epub ahead of print.
3. Murali B, Durbin L, Vijaykumar S, Yang L, Li S, Zhao L, Hawthorne S, Kanas G, Davis C, Clark O. Treatment of HR+/HER2- breast cancer in urban mainland China: results from the CancerMPact Survey 2019. Breast Cancer Res Treat. 2022 Oct;195(3):441-451.
4. de Sá Moreira E, Robinson D, Hawthorne S, Zhao L, Hanson M, Kanas G, Turnure M, Davis C, Clark O. Patterns of Care and Outcomes for Non-Metastatic Prostate Cancer in the United States: Results of the CancerMPact® Survey 2018. Cancer Manag Res. 2021 Dec 11;13:9127-9137.
5. Kanas G, Ge W, Quek RG, Keeven K, Nersesyan K, Arnason JE. Epidemiology of diffuse large B-cell lymphoma (DLBCL) and follicular lymphoma (FL) in the United States and Western Europe: population-level projections for 2020–2025. Leukemia & Lymphoma. 2021 Oct 4:1-0.
6. Ge W, Arnason JE, Quek RG, Keeven K, Nersesyan K, Kanas G. EPR21-034: Epidemiology of Diffuse Large B Cell Lymphoma (DLBCL) and Follicular Lymphoma (FL) Patients by Line of Therapy in the United States (US) and Europe (EU). Journal of the National Comprehensive Cancer Network. 2021 Mar 17;19(3.5):EPR21-034.
7. Kanas G, Clark O, Keeven K, Nersesyan K, Sansbury L, Hogea C. Estimate of multiple myeloma patients by line of therapy in the USA: population-level projections 2020–2025. Future Oncology. 2021 Feb;17(8):921-30.
8. Kanas G, Clark O, Keeven K, Nersesyan K, Sansbury L, Hoggea C. Population-Level Projections for Multiple Myeloma Patients By Line of Therapy in the USA. Blood. 2020 Nov 5;136:2-3.
9. Hawthorne S, Zhao L, Hanson M, Kanas G, Davis C, Robinson D, Turnure M, Clark O. Treatment of Advanced/Metastatic Melanoma in the United States and Western Europe: Results of the CancerMPact Survey. Cancer Manag Res. 2020 Jul 10;12:5633-5639.
10. Tremblay G, Cariou C, Recher C, Dolph M, Brandt P, Blanc AS, Forsythe A. Cost-effectiveness of midostaurin in the treatment of newly diagnosed FLT3-mutated acute myeloid leukemia in France. The European Journal of Health Economics. 2020 Jun;21(4):543-55.