These tools will no longer be maintained as of December 31, 2024. Archived website can be found here. PubMed4Hh GitHub repository can be found here. Contact NLM Customer Service if you have questions.


BIOMARKERS

Molecular Biopsy of Human Tumors

- a resource for Precision Medicine *

115 related articles for article (PubMed ID: 34042849)

  • 1. A Medical Report Feature for OSSE Rare Disease Registries.
    Schueler K; Zieschank A; Göbel J; Vasseur J; Schaaf J; Hohenfellner K; Wildenhain S; Storf H
    Stud Health Technol Inform; 2021 May; 281():1085-1086. PubMed ID: 34042849
    [TBL] [Abstract][Full Text] [Related]  

  • 2. [Registries for rare diseases : OSSE - An open-source framework for technical implementation].
    Storf H; Schaaf J; Kadioglu D; Göbel J; Wagner TOF; Ückert F
    Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz; 2017 May; 60(5):523-531. PubMed ID: 28289778
    [TBL] [Abstract][Full Text] [Related]  

  • 3. Development of an Interactive Dashboard for OSSE Rare Disease Registries.
    Vasseur J; Zieschank A; Göbel J; Schaaf J; Dahmer-Heath M; König J; Kadioglu D; Storf H
    Stud Health Technol Inform; 2022 May; 293():187-188. PubMed ID: 35592980
    [TBL] [Abstract][Full Text] [Related]  

  • 4. Enabling External Inquiries to an Existing Patient Registry by Using the Open Source Registry System for Rare Diseases: Demonstration of the System Using the European Society for Immunodeficiencies Registry.
    Scheible R; Kadioglu D; Ehl S; Blum M; Boeker M; Folz M; Grimbacher B; Göbel J; Klein C; Nieters A; Rusch S; Kindle G; Storf H
    JMIR Med Inform; 2020 Oct; 8(10):e17420. PubMed ID: 33026355
    [TBL] [Abstract][Full Text] [Related]  

  • 5. OSSE Goes FAIR - Implementation of the FAIR Data Principles for an Open-Source Registry for Rare Diseases.
    Schaaf J; Kadioglu D; Goebel J; Behrendt CA; Roos M; van Enckevort D; Ückert F; Sadiku F; Wagner TOF; Storf H
    Stud Health Technol Inform; 2018; 253():209-213. PubMed ID: 30147075
    [TBL] [Abstract][Full Text] [Related]  

  • 6. How to design a registry for undiagnosed patients in the framework of rare disease diagnosis: suggestions on software, data set and coding system.
    Berger A; Rustemeier AK; Göbel J; Kadioglu D; Britz V; Schubert K; Mohnike K; Storf H; Wagner TOF
    Orphanet J Rare Dis; 2021 May; 16(1):198. PubMed ID: 33933089
    [TBL] [Abstract][Full Text] [Related]  

  • 7. The ERN-LUNG Population Registry: Aims, Software-Implementation and First Results.
    Schaaf J; Zieschank A; Goebel J; Wagner TOF; Pennekamp P; Omran H; Storf H
    Stud Health Technol Inform; 2022 Jun; 295():55-58. PubMed ID: 35773805
    [TBL] [Abstract][Full Text] [Related]  

  • 8. The Registry Data Warehouse in the European Reference Network for Rare Respiratory Diseases - Background, Conception and Implementation.
    Schaaf J; Chalmers J; Omran H; Pennekamp P; Sitbon O; Wagner TOF; Reis A; Kadioglu D; Storf H
    Stud Health Technol Inform; 2021 May; 278():41-48. PubMed ID: 34042874
    [TBL] [Abstract][Full Text] [Related]  

  • 9. Design of a framework for the deployment of collaborative independent rare disease-centric registries: Gaucher disease registry model.
    Bellgard MI; Napier KR; Bittles AH; Szer J; Fletcher S; Zeps N; Hunter AA; Goldblatt J
    Blood Cells Mol Dis; 2018 Feb; 68():232-238. PubMed ID: 28190666
    [TBL] [Abstract][Full Text] [Related]  

  • 10. European lipodystrophy registry: background and structure.
    von Schnurbein J; Adams C; Akinci B; Ceccarini G; D'Apice MR; Gambineri A; Hennekam RCM; Jeru I; Lattanzi G; Miehle K; Nagel G; Novelli G; Santini F; Santos Silva E; Savage DB; Sbraccia P; Schaaf J; Sorkina E; Tanteles G; Vantyghem MC; Vatier C; Vigouroux C; Vorona E; Araújo-Vilar D; Wabitsch M
    Orphanet J Rare Dis; 2020 Jan; 15(1):17. PubMed ID: 31941540
    [TBL] [Abstract][Full Text] [Related]  

  • 11. The de novo FAIRification process of a registry for vascular anomalies.
    Groenen KHJ; Jacobsen A; Kersloot MG; Dos Santos Vieira B; van Enckevort E; Kaliyaperumal R; Arts DL; 't Hoen PAC; Cornet R; Roos M; Kool LS
    Orphanet J Rare Dis; 2021 Sep; 16(1):376. PubMed ID: 34481493
    [TBL] [Abstract][Full Text] [Related]  

  • 12. Data Quality in Rare Diseases Registries.
    Kodra Y; Posada de la Paz M; Coi A; Santoro M; Bianchi F; Ahmed F; Rubinstein YR; Weinbach J; Taruscio D
    Adv Exp Med Biol; 2017; 1031():149-164. PubMed ID: 29214570
    [TBL] [Abstract][Full Text] [Related]  

  • 13. Linked Registries: Connecting Rare Diseases Patient Registries through a Semantic Web Layer.
    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
    Biomed Res Int; 2017; 2017():8327980. PubMed ID: 29214177
    [TBL] [Abstract][Full Text] [Related]  

  • 14. Enhancing requirements engineering for patient registry software systems with evidence-based components.
    Lindoerfer D; Mansmann U
    J Biomed Inform; 2017 Jul; 71():147-153. PubMed ID: 28536063
    [TBL] [Abstract][Full Text] [Related]  

  • 15. A model for the European platform for rare disease registries.
    Vittozzi L; Gainotti S; Mollo E; Donati C; Taruscio D
    Public Health Genomics; 2013; 16(6):299-304. PubMed ID: 24503590
    [TBL] [Abstract][Full Text] [Related]  

  • 16. Design, development and deployment of a web-based patient registry for rare genetic lipid disorders.
    Napier KR; Hooper AJ; Ng DM; Render L; Bell DA; Pang J; Watts GF; Bellgard MI; Burnett JR
    Pathology; 2020 Jun; 52(4):447-452. PubMed ID: 32276786
    [TBL] [Abstract][Full Text] [Related]  

  • 17. [Implementing a population-based rare diseases registry in Spain: the Navarre´s experience].
    Vicente E; Guevara M; Lasanta MJ; Ramos-Arroyo MA; Ardanaz E
    Rev Esp Salud Publica; 2018 Nov; 92():. PubMed ID: 30442882
    [TBL] [Abstract][Full Text] [Related]  

  • 18. The current situation and needs of rare disease registries in Europe.
    Taruscio D; Gainotti S; Mollo E; Vittozzi L; Bianchi F; Ensini M; Posada M
    Public Health Genomics; 2013; 16(6):288-98. PubMed ID: 24503589
    [TBL] [Abstract][Full Text] [Related]  

  • 19. The role of registries in rare genetic lipid disorders: Review and introduction of the first global registry in lipoprotein lipase deficiency.
    Steinhagen-Thiessen E; Stroes E; Soran H; Johnson C; Moulin P; Iotti G; Zibellini M; Ossenkoppele B; Dippel M; Averna MR;
    Atherosclerosis; 2017 Jul; 262():146-153. PubMed ID: 28284702
    [TBL] [Abstract][Full Text] [Related]  

  • 20. [Registries for rare diseases. Compliance and data protection].
    Pommerening K; Debling D; Kaatsch P; Blettner M
    Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz; 2008 May; 51(5):491-9. PubMed ID: 18696140
    [TBL] [Abstract][Full Text] [Related]  

    [Next]    [New Search]
    of 6.