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Standardization of Questions in Rare Disease Registries: The PRISM Library Project
If widely used, PRISM will enable the re-use of questions across registries, hence reducing the variation in registry data collection and facilitating a bottom-up standardization of patient registries.Rachel Lynn Richesson, Denise Shereff, James Everett Andrews
Interact J Med Res 2012;1(2):e10Download Citation: END BibTex RIS
Ability to Generate Patient Registries Among Practices With and Without Electronic Health Records
In the traditional paradigm of care, a physician reviews the record of, and evaluates, one patient at a time.Adam Wright, Elizabeth McGlinchey, Eric Poon, Chelsea Jenter, David Bates, Steven Simon
J Med Internet Res 2009;11(3):e31Download Citation: END BibTex RIS
Raphael Scheible, Dennis Kadioglu, Stephan Ehl, Marco Blum, Martin Boeker, Michael Folz, Bodo Grimbacher, Jens Göbel, Christoph Klein, Alexandra Nieters, Stephan Rusch, Gerhard Kindle, Holger Storf
JMIR Med Inform 2020;8(10):e17420Download Citation: END BibTex RIS

Bin Li, Steven A Eschrich, Anders Berglund, Melissa Mitchell, David Fenstermacher, Hadi Danaee, Hongyue Dai, Daniel Sullivan, William L Trepicchio, William S Dalton
JMIR Res Protoc 2017;6(3):e45Download Citation: END BibTex RIS
Maryam Zolnoori, Mark D Williams, William B Leasure, Kurt B Angstman, Che Ngufor
JMIR Res Protoc 2020;9(10):e18366Download Citation: END BibTex RIS
Jason Michael Springer, Tanaz A Kermani, Antoine Sreih, Dianne G Shaw, Kalen Young, Cristina M Burroughs, Peter A Merkel
J Med Internet Res 2020;22(7):e17231Download Citation: END BibTex RIS

Laura Ashley, Helen Jones, James Thomas, Alex Newsham, Amy Downing, Eva Morris, Julia Brown, Galina Velikova, David Forman, Penny Wright
J Med Internet Res 2013;15(10):e230Download Citation: END BibTex RIS
Safety and Biovigilance in Organ Donation (SAFEBOD): Protocol for a Population-Based Cohort Study
The CHeReL uses a separation model for data integration in order to maintain patient confidentiality [9]. Personal identifiers are split from health information for each data set.Brenda Rosales, James Hedley, Nicole De La Mata, Claire M Vajdic, Patrick Kelly, Kate Wyburn, Angela C Webster, The SAFEBOD Study Group
JMIR Res Protoc 2020;9(10):e18282Download Citation: END BibTex RIS

Discovering Cohorts of Pregnant Women From Social Media for Safety Surveillance and Analysis
These registries enroll women prospectively (eg, after exposure but before childbirth) in a voluntary fashion and follow them for the entire duration of the pregnancy or longer.Abeed Sarker, Pramod Chandrashekar, Arjun Magge, Haitao Cai, Ari Klein, Graciela Gonzalez
J Med Internet Res 2017;19(10):e361Download Citation: END BibTex RIS
Claus Manniche, Lonny Stokholm, Sophie L Ravn, Tonny E Andersen, Lars PA Brandt, Katrine H Rubin, Berit Schiøttz-Christensen, Lars L Andersen, Søren G Skousgaard
JMIR Res Protoc 2020;9(8):e21380Download Citation: END BibTex RIS