Association of COVID-19 Versus COVID-19 Vaccination With Kidney Function and Disease Activity in Primary Glomerular Disease: A Report of the Cure Glomerulonephropathy Study

Autor: Ahn, Wooin, Appel, Gerald, Appelbaum, Paul, Babayev, Revekka, Chan, Brenda, D’Agati, Vivette Denise, Dogra, Samitri, Fernandez, Hilda, Gharavi, Ali, Hines, William, Husain, Syed Ali, Jain, Namrata, Kiryluk, Krzysztof, Lin, Fangming, Marasa, Maddalena, Markowitz, Glen, Rasouly, Hila Milo, Mohan, Sumit, Mongera, Nicola, Nestor, Jordan, Nickolas, Thomas, Radhakrishnan, Jai, Rao, Maya, Sanna-Cherchi, Simone, Shirazian, Shayan, Stokes, Michael Barry, Uy, Natalie, Valeri, Anthony, Vena, Natalie, Foroncewicz, Bartosz, Moszczuk, Barbara, Mucha, Krzysztof, Perkowska-Ptasińska, Agnieszka, Ghiggeri, Gian Marco, Lugani, Francesca, Ambruzs, Josephine, Liapis, Helen, Baracco, Rossana, Jain, Amrish, Isa Ashoor, Aviles, Diego, Srivastava, Tarak, Ahn, Sun-Young, Devarajan, Prasad, Erkan, Elif, Claes, Donna, Stone, Hillarey, Mason, Sherene, Gbadegesin, Rasheed, Gomez-Mendez, Liliana, Yin, Hong (Julie), Cai, Yi, Jens, Goebel, Steinke, Julia, Weaver, Donald, Lane, Jerome, Cramer, Carl, Pan, Cindy, Paloian, Neil, Sreedharan, Rajasree, Selewski, David, Twombley, Katherine, Bowers, Corinna, Dreher, Mary, Kallash, Mahmoud, Mahan, John, Sharpe, Samantha, Al-Uzri, Amira, Iragorri, Sandra, Belsha, Craig, Alge, Joseph, Braun, Michael, Gomez, A.C., Wenderfer, Scott, Vasylyeva, Tetyana, Feig, Daniel, Fuentes, Gabriel Cara, Hannah, Melisha, Nester, Carla, Chishti, Aftab, Klein, Jon, Katsoufis, Chryso, Seeherunvong, Wacharee, Wong, Craig, Mathews, Nisha, Barcia, John, Swiatecka-Urban, Agnes, Bartosh, Sharon, Hunley, Tracy, Dharnidharka, Vikas, Gaut, Joseph, Laurin, Louis-Philippe, Royal, Virginie, Achanti, Anand, Budisavljevic, Milos, Self, Sally, Ghossein, Cybele, Peleg, Yonatan, Wadhwani, Shikha, Almaani, Salem, Ayoub, Isabelle, Nadasdy, Tibor, Parikh, Samir, Rovin, Brad, Chang, Anthony, Fatima, Huma, Julian, Bruce, Novak, Jan, Renfrow, Matthew, Rizk, Dana, Chen, Dhruti, Derebail, Vimal, Falk, Ronald, Gibson, Keisha, Hogan, Susan, Jain, Koyal, Jennette, J. Charles, Mottl, Amy, Poulton, Caroline, Saha, Manish Kanti, Fogo, Agnes, Sanghani, Neil, Kidd, Jason, Muthusamy, Selvaraj, Hou, Jean, Lemley, Kevin, Mika, Warren, Russo, Pierre, Denburg, Michelle, Kogon, Amy, Meyers, Kevin, Pradhan, Madhura, O’Toole, John, Sedor, John, Sethna, Christine, Vento, Suzanne, Atta, Mohamed, Bagnasco, Serena, Neu, Alicia, Sperati, John, Adler, Sharon, Dai, Tiane, Dukkipati, Ram, Fervenza, Fernando, Sethi, Sanjeev, Kaskel, Frederick, Brathwaite, Kaye, Reidy, Kimberly, Weisstuch, Joseph, Wu, Ming, Zhdanova, Olga, Heymann, Jurgen, Kopp, Jeffrey, Waldman, Meryl, Winkler, Cheryl, Krissberg, Jill, Lafayette, Richard, Fahmeedah, Kamal, Talley, Elizabeth, Hladunewich, Michelle, Parekh, Rulan, Avila-Casado, Carmen, Cattran, Daniel, Heather, Reich, Boll, Philip, Drexler, Yelena, Fornoni, Alessia, Blazius, Brooke, Hodgin, Jeffrey, Oliverio, Andrea, Hogan, Jon, Palmer, Matthew, Abromovitz, Blaise, Mortiz, Michael, Alpers, Charles, Jefferson, J. Ashley, Brown, Elizabeth, Sambandam, Kamal, Roehm, Bethany, Graff, John, Gillespie, Brenda, Kretzler, Matthias, Nast, Cynthia, Barisoni, Laura, Guay-Woodford, Lisa M., Wang, Chia-shi, Glenn, Dorey A., Helmuth, Margaret, Smith, Abigail R., Bomback, Andrew S., Canetta, Pietro A., Coppock, Gaia M., Khalid, Myda, Tuttle, Katherine R., Bou-Matar, Raed, Greenbaum, Larry A., Robinson, Bruce M., Holzman, Lawrence B., Smoyer, William E., Rheault, Michelle N., Gipson, Debbie, Mariani, Laura H.

Publikováno v: In American Journal of Kidney Diseases January 2024 83(1):37-46

How to design a registry for undiagnosed patients in the framework of rare disease diagnosis: suggestions on software, data set and coding system

Autor: Alexandra Berger, Anne-Kathrin Rustemeier, Jens Göbel, Dennis Kadioglu, Vanessa Britz, Katharina Schubert, Klaus Mohnike, Holger Storf, Thomas O. F. Wagner

Publikováno v: Orphanet Journal of Rare Diseases, Vol 16, Iss 1, Pp 1-14 (2021)

Abstract Background About 30 million people in the EU and USA, respectively, suffer from a rare disease. Driven by European legislative requirements, national strategies for the improvement of care in rare diseases are being developed. To improve tim

Externí odkaz: https://doaj.org/article/1d574d5518b242cb9bc721747a472dc6

Development of an Interactive Dashboard for OSSE Rare Disease Registries

Autor: Jessica Vasseur, Axel Zieschank, Jens Göbel, Jannik Schaaf, Mareike Dahmer-Heath, Jens König, Dennis Kadioglu, Holger Storf

Background: The Open Source Registry System for Rare Diseases (OSSE), a web-based tool to create rare disease patient registries, currently offers no possibility to view aggregated registry data within the system. Here, we present the development and

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::595efe3dfa993abad9eecab530a53fce
https://doi.org/10.3233/shti220367

A Medical Report Feature for OSSE Rare Disease Registries

Autor: Sarah Wildenhain, Holger Storf, Jessica Vasseur, Axel Zieschank, Jens Göbel, Katharina Hohenfellner, Jannik Schaaf, Katja Schueler

Publikováno v: MIE

Web-based patient registries support clinicians by providing a way to effectively store and process data. Here, we present a new feature for the open-source registry software OSSE: medical reports generated with R Markdown. As part of a rare disease

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::5f3a60faef9fdacf55a90d3fbb21c9d7
https://doi.org/10.3233/shti210356

Register für seltene Erkrankungen

Autor: Frank Ückert, Thomas O. F. Wagner, Jens Göbel, Jannik Schaaf, Holger Storf, Dennis Kadioglu

Publikováno v: Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz. 60:523-531

Meager amounts of data stored locally, a small number of experts, and a broad spectrum of technological solutions incompatible with each other characterize the landscape of registries for rare diseases in Germany. Hence, the free software Open Source

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::06b872e7e03e447c5a1d7836e664f7de
https://doi.org/10.1007/s00103-017-2536-7