Integrated Image Data and Medical Record Management for Rare Disease Registries. A General Framework and its Instantiation to the German Calciphylaxis Registry

Journal of Digital Imaging

Volumn 27, Issue 6, 2014, Pages 702-713

  Deserno, Thomas M ^a   Haak, Daniel ^a   Brandenburg, Vincent ^a   Deserno, Verena ^a   Classen, Christoph ^a   Specht, Paula ^a  

^a UNIVERSITY HOSPITAL RWTH AACHEN   (Germany)

Author keywords

Clinical trial; Data management; Electronic data capture; Image annotation; Image management; Image processing; Rare disease registry

Indexed keywords

ACCESS CONTROL; DATA INTEGRATION; DISEASES; IMAGE ANNOTATION; IMAGE PROCESSING; INFORMATION MANAGEMENT; MEDICAL IMAGING; OPEN SOURCE SOFTWARE; OPEN SYSTEMS;

ACADEMIC INSTITUTIONS; AUTOMATIC IMAGE ANALYSIS; BINARY LARGE OBJECTS; CLINICAL TRIAL; ELECTRONIC DATA; IMAGE MANAGEMENT; MANUAL IMAGE ANNOTATIONS; RARE DISEASE;

IMAGE ANALYSIS;

CALCIPHYLAXIS; DATA BASE; ELECTRONIC MEDICAL RECORD; FACTUAL DATABASE; GERMANY; HUMAN; INTERNET; ORGANIZATION AND MANAGEMENT; RARE DISEASES; REGISTER; STATISTICS AND NUMERICAL DATA;

CALCIPHYLAXIS; DATABASE MANAGEMENT SYSTEMS; DATABASES, FACTUAL; GERMANY; HUMANS; INTERNET; MEDICAL RECORDS SYSTEMS, COMPUTERIZED; RARE DISEASES; REGISTRIES;

EID: 84911981967     PISSN: 08971889     EISSN: 1618727X     Source Type: Journal    
DOI: 10.1007/s10278-014-9698-8     Document Type: Article

References (36)

1. Rubinstein YR, Groft SC, Bartek R, Brown K, Christensen RA, Collier E, Farber A, Farmer J, Ferguson JH, Forrest CB, Lockhart NC, McCurdy KR, Moore H, Pollen GB, Rangel Miller RV, Hullm S, Vaught J: Creating a global rare disease patient registry linked to a rare diseases biorepository database: Rare Disease-HUB (RD-HUB). Contemp Clin Trials 31:394–404, 2010
2. Bellgard M, Beroud C, Parkinson K, Harris T, Ayme S, Baynam G, Weeramanthri T, Dawkins H, Hunter A: Dispelling myths about rare disease registry system development. Source Code Biol Med 8(1):21, 2013
3. Bellgard MI, Macgregor A, Janon F, Harvey A, O’Leary P, Hunter A, Dawkins H: A modular approach to disease registry design: successful adoption of an internet-based rare disease registry. Hum Mutat 33(10):E2356–E2366, 2012
4. Messiaen C, Le Mignot L, Rath A, Richard JB, Dufour E, Ben Said M, Jais JP, Verloes A, Le Merrer M, Bodemer C, Baujat G, Gerard-Blanluet M, Bourdon-Lanoy E, Salomon R, Ayme S, Landais P: CEMARA: a Web dynamic application within a N-tier architecture for rare diseases. Stud Health Technol Inform 136:51–56, 2008
5. Seo H, Kim D, Chae JH, Kang HG, Lim BC, Cheong HI, Kim JH: Development of Korean rare disease knowledge base. Healthc Inform Res 18(4):272–278, 2012
6. Stausberg J, Altmann A, Antony G, Drepper J, Sax U, Schütt A: Register for networked medical research in Germany. Appl Clin Inform 1(4):408–418, 2010
7. Drepper J, Semler SC (ed). IT infrastructure in patient-centered research. State of the art and required actions (German). Technical report. IT-Reviewing Board of TMF. Akademische Verlagsgesellschaft AKA GmbH, Berlin, 2013 (ISBN 978-3-89838-690-6)
8. Ayme S (ed). Disease Registries in Europe. Orphanet Report Series, Rare Diseases Collection. Orphanet Technical Report. Jan 2013. Availabe at: http://www.orpha.net/orphacom/cahiers/docs/GB/Registries.pdf
9. Souza MP, Miller VR: Significance of patient registries for dermatological disorders. J Investig Dermatol 132:1749–1752, 2012
10. Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG: Research electronic data capture (REDCap) – A metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 42(2):377–381, 2009
11. Natter MD, Quan J, Ortiz DM, Bousvaros A, Ilowite NT, Inman CJ, Marsolo K, McMurry AJ, Sandborg CI, Schanberg LE, Wallace CA, Warren RW, Weber GM, Mandl KD: An i2b2-based, generalizable, open source, self-scaling chronic disease registry. J Am Med Inform Assoc 20:172–179, 2013
12. Kohane IS, Churchill SE, Murphy SN: A translational engine at the national scale: informatics for integrating biology and the bedside. J Am Med Inform Assoc 19:181e5, 2012
13. Wang X, Martinez C, Wang J, Liu Y, Liu BJ. Development of a user customizable imaging informatics-based intelligent workflow engine system to enhance rehabilitation clinical trials. Proceedings SPIE 2014; 9039, in press
14. Langer S, Bartholmai B: Imaging informatics: challenges in multi-site imaging trials. J Digit Imaging 24(1):151–159, 2011. doi:10.1007/s10278-010-9282-9
15. Erickson BJ, Pan T, Marcus DS: CTSA Imaging Informatics Project Group. Whitepapers on imaging infrastructure for research: Part 1: General workflow considerations. J Digit Imaging 25(4):449–453, 2012
16. Marcus DS, Erickson BJ, Pan T: Imaging infrastructure for research. Part 2. Data management practices. J Digit Imaging 25(5):566–569, 2012
17. Prins AH, Abu-Hanna A: Requirements analysis of information services for patients on a general practitioner's website–patient and general practitioner's perspectives. Methods Inf Med 46(6):629–635, 2007
18. Prokosch HU, Beck A, Ganslandt T, Hummel M, Kiehntopf M, Sax U, Ückert F, Semler S: IT Infrastructure Components for Biobanking. Appl Clin Inform 1(4):419–429, 2010
19. Deserno TM, Deserno V, Legewie V, Schafhausen J, Eisert A, Schmidt-Kotsas A, Kirstein S, Willems J, Spitzer K, Schulz JB. IT support for translational management of clinical trials based on the Google Web Toolkits. German Medical Science (GMS) Meeting Abstract 2011: 11gmds023. (German)
20. Brandenburg VM, Kramann R, Specht P, Ketteler M: Calciphylaxis in CKD and beyond. Nephrol Dial Transplant 27(4):1314–1318, 2012
21. Brandenburg V, Specht P, Floege J, Ketteler M. Seven Years of Experience with the German CUA Registry. Abstract Presentation. American Society of Nephrology Renal Week, 2013
22. Deserno TM, Sarandi I, Jose A, Haak D, Jonas S, Specht P, Brandenburg V. Towards quantitative Calciphylaxis. Proceedings SPIE 2014; 9035: in press
23. Jäkel J, Schmidt R, Leusmann P, Spreckelsen C, Knüchel R, Dahl E, Veeck J: Biospecimen quality management at the RWTH centralized biomaterial bank (RWTH cBMB). Pathologe 34(1):136, 2013
24. Hirschberg I, Knüppel H, Strech D: Practice variation across consent templates for biobank research. a survey of German biobanks. Front Genet 4:240, 2013
25. Nebel E, Masinter L. Form-based file upload in HTML. Request for Comments no. 1867. The Internet Engineering Task Force (IETF), Network Working Group. 1995. Available at http://www.ietf.org/rfc/rfc1867.txt
26. Deserno TM, Haak D, Samsel C, Gehlen J, Kabino K. Integration image management and analysis into OpenClinica using web services. Proc SPIE 8674: 0F1-10, 2013
27. Wagner M, Glock J, Sariyar M, Borg A. PID Generator. Technical Manual. Version 1.2. Dept. of Medical Informatics and Biometry. Johannes-Gutenberg-Universität Mainz, Germany, 2008
28. Lehmann TM, Schubert H, Keysers D, Kohnen M, Wein BB: The IRMA code for unique classification of medical images. Proc SPIE 5033:440–451, 2003
29. Digital Imaging and Communications in Medicine (DICOM). Part 19: Application Hosting. PS3.19-2011. National Electrical Manufacturers Association, Rosslyn, VA, USA, 2011
30. Prior FW, Erickson BJ, Tarbox L: Open source software projects of the caBIG In Vivo Imaging Workspace Software special interest group. J Digit Imaging 20(Suppl 1):94–100, 2007
31. Channin DS, Mongkolwat P, Kleper V, Sepukar K, Rubin DL: The caBIG annotation and image markup project. J Digit Imaging 23(2):217–225, 2010
32. Ohmann C, Kuchinke W: Future developments of medical informatics from the viewpoint of networked clinical research. Interoperability and integration. Methods Inf Med 48(1):45–54, 2009
33. Fridsma DB, Evans J, Hastak S, Mead CN: The BRIDG project: a technical report. J Am Med Inform Assoc 15(2):130–137, 2008
34. Hullsiek KH, George M, Brown SK: Designing and managing a flexible and dynamic biorepository system: a 15-year perspective from the CPCRA, ESPRIT, and INSIGHT clinical trial networks. Curr Opin HIV AIDS 5(6):538–544, 2010
35. Lin MC, Vreeman DJ, McDonald CJ, Huff SM: A characterization of local LOINC mapping for laboratory tests in three large institutions. Methods Inf Med 50(2):105–114, 2011
36. Dugas M, Thun S, Frankewitsch T, Heitmann KU: LOINC codes for hospital information systems documents: a case study. J Am Med Inform Assoc 16(3):400–403, 2009