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Standardization of Questions in Rare Disease Registries: The PRISM Library Project

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):e10


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

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

As these patients and the health care experts specializing in their diseases are spread over several countries, rare diseases need structures for patient support and for disseminating scientific advances that differ from those for frequent diseases.

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):e17420


A Systematic Framework for Analyzing Observation Data in Patient-Centered Registries: Case Study for Patients With Depression

A Systematic Framework for Analyzing Observation Data in Patient-Centered Registries: Case Study for Patients With Depression

To enable a comprehensive view of a patient and enable research that can guide policy and best practices, there is a need for patient-centered registries to be integrated with the EHR, administrative claims data, and pharmacy databases [6].

Maryam Zolnoori, Mark D Williams, William B Leasure, Kurt B Angstman, Che Ngufor

JMIR Res Protoc 2020;9(10):e18366


Safety and Biovigilance in Organ Donation (SAFEBOD): Protocol for a Population-Based Cohort Study

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):e18282


Discovering Cohorts of Pregnant Women From Social Media for Safety Surveillance and Analysis

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):e361