Project Z
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Research projects and collaborative groups that involve multiple institutes are of great importance to answer key questions of complex diseases. When different basic research approaches meet patient oriented projects and if the latter ones include different perspectives, questionnaires and examinations, it becomes even more complex. Such a comprehensive approach is the fundament of the proposed research unit PRUSEARCH and will be only successful by close collaboration and thorough coordination. Stand-alone research units are often not able to manage structure and logistics involved in combining multidisciplinary data, interoperability methods and biomaterial processing. Being a platform project, this project (#Z) supports the other subprojects to overcome these challenges, pool expertise and reducing parallel expenditures.
We will provide and manage a central information infrastructure by building an up-to-date flexible and data protection legislation conform data capture system connected to a consented project space within a centralized database. It includes automatic integration and pseudonymization of multiple clinical data, questionnaire responses and standardized functional characterizations. The internal section of the homepage prusearch.net will contain harmonized SOPs (standard operation procedures) and access to the database for each project. For coordinated handling of biomaterial we will establish a physical Biomaterial Bank (BMB) for skin biopsies of all-center recruited patients with chronic pruritus and their controls.
Partners collecting tissues will ship the human specimens to the BMB for handling and storage to enable material exchange between projects and also the combined use of biopsies from the same patient in different projects. Furthermore, the BMB will provide basic material analysis such as sectioning, dermatohistopathologic and molecular characterization of material, and DNA, RNA and protein extraction.
Finally, the Z-project will provide an information infrastructure for intelligent data capture and perform centralized gene expression analysis by means of high-throughput mRNA-sequencing and bioinformatics analyses. Coordination, harmonization of protocols and methods, actual handling of biomaterials and bioinformatics within the consortium requires a central project which will allow achievement of the additional value aimed to in this consortium.
We will provide and manage a central information infrastructure by building an up-to-date flexible and data protection legislation conform data capture system connected to a consented project space within a centralized database. It includes automatic integration and pseudonymization of multiple clinical data, questionnaire responses and standardized functional characterizations. The internal section of the homepage prusearch.net will contain harmonized SOPs (standard operation procedures) and access to the database for each project. For coordinated handling of biomaterial we will establish a physical Biomaterial Bank (BMB) for skin biopsies of all-center recruited patients with chronic pruritus and their controls.
Partners collecting tissues will ship the human specimens to the BMB for handling and storage to enable material exchange between projects and also the combined use of biopsies from the same patient in different projects. Furthermore, the BMB will provide basic material analysis such as sectioning, dermatohistopathologic and molecular characterization of material, and DNA, RNA and protein extraction.
Finally, the Z-project will provide an information infrastructure for intelligent data capture and perform centralized gene expression analysis by means of high-throughput mRNA-sequencing and bioinformatics analyses. Coordination, harmonization of protocols and methods, actual handling of biomaterials and bioinformatics within the consortium requires a central project which will allow achievement of the additional value aimed to in this consortium.
Related Publications:
- Bruland P, Forster C, Breil B, Ständer S, Dugas M, Fritz F. Does single-source create an added value? Evaluating the impact of introducing x4T into the clinical routine on workflow modifications, data quality and cost-benefit. Int J Med Informatics 2014; 83:915-28
- Fritz F, Balhorn S, Riek M, Breil B, Dugas M. Qualitative and quantitative evaluation of EHR-integrated mobile patient questionnaires regarding usability and cost-efficiency. Int J Med Inform 2012; 81:303-313.
- Ständer S, Pogatzki-Zahn E, Stumpf A, Fritz F, Pfleiderer B, Ritzkat A, Bruland P, Lotts T, Müller-Tidow C, Heuft G, Pavenstädt HJ, Schneider G, Van Aken H, Heindel W, Wiendl H, Dugas M, Luger TA. Facing the challenges of chronic pruritus – a report from a multi-disciplinary medical itch center in Germany. Acta Derm Venereol 2015; 95:266-71.
- Ständer S, Zeidler C, Riepe C, Steinke S, Fritz F, Bruland P, Soto-Rey I, Storck M, Agner T, Augustin M, Blome C, Dalgard F, Evers AW, Garcovich S, Gonçalo M, Lambert J, Legat FJ, Leslie T, Misery L, Raap U, Reich A, Şavk E, Streit M, Serra-Baldrich E, Szepietowski J, Wallengren J, Weisshaar E, Dugas M. European EADV network on assessment of severity and burden of Pruritus (PruNet): first meeting on outcome tools. J Eur Acad Dermatol Venereol. 2016 Jul;30(7):1144-7.
- Agelopoulos K, Richter GH, Schmidt E, Dirksen U, von Heyking K, Moser B, Klein HU, Kontny U, Dugas M, Poos K, Korsching E, Buch T, Weckesser M, Schulze I, Besoke R, Witten A, Stoll M, Köhler G, Hartmann W, Wardelmann E, Rossig C, Baumhoer D, Jürgens H, Burdach S, Berdel WE, Müller-Tidow C. Deep Sequencing in Conjunction with Expression and Functional Analyses Reveals Activation of FGFR1 in Ewing Sarcoma. Clin Cancer Res. 2015;21(21):4935-46
- Ständer S, Blome C, Anastasiadou Z, Zeidler C, Jung KA, Tsianakas A, Neufang G, Augustin M. Dynamic pruritus score: evaluation of the validity and reliability of a new instrument to assess pruritus course. Acta Derm Venereol 2017; 97: 230-234.
- Ständer S, Augustin M, Reich A, Blome C, Ebata T, Phan NQ, Szepietowski JC. Pruritus assessment in clinical trials: A consensus paper of the Special Interest Group Scoring Itch in Clinical Trials of the International Forum for the Study of Itch (IFSI). Acta Derm Venereol 2013;93:509-14
- Magerl W, Krumova EK, Baron R, Tölle T, Treede RD, Maier C. Reference data for quantitative sensory testing (QST): refined stratification for age and a novel method for statistical comparison of group data. Pain 2010;151(3):598-605.
- Maier C, Baron R Tölle TR, Binder A, Birbaumer N, Birklein F, Gierthmühlen J, Flor H, Geber C, Huge V, Krumova EK, Landwehrmeyer GB, Magerl W, Maihöfner C, Richter H, Rolke R, Scherens A, Schwarz A, Sommer C, Tronnier V, Uçeyler N, Valet M, Wasner G, Treede RD. Quantitative sensory testing in the German Research Network on Neuropathic Pain (DFNS): somatosensory abnormalities in 1236 patients with different neuropathic pain syndromes. Pain 2010;150(3):439-450.
- Pfau DB, Krumova EK, Treede RD, Baron R, Toelle T, Birklein F, Eich W, Geber C, Gerhardt A, Weiss T, Magerl W, Maier C. Quantitative sensory testing in the German Research Network on Neuropathic Pain (DFNS): reference data for the trunk. Pain 2014;155(5):1002-1015.