Search Articles

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

Download 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):e31

Download Citation: END BibTex RIS

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

Download Citation: END BibTex RIS

Use of the Total Cancer Care System to Enrich Screening for CD30-Positive Solid Tumors for Patient Enrollment Into a Brentuximab Vedotin Clinical Trial: A Pilot Study to Evaluate Feasibility

The biopharmaceutical industry has responded by developing a treatment armamentarium that capitalizes on tumor-specific features and improves outcomes for select patient populations.

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):e45

Download Citation: END BibTex RIS

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

Download Citation: END BibTex RIS

Clinical Characteristics of an Internet-Based Cohort of Patient-Reported Diagnosis of Granulomatosis With Polyangiitis and Microscopic Polyangiitis: Observational Study

prospective longitudinal registry of patient- or caregiver-reported information.

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):e17231

Download Citation: END BibTex RIS

Integrating Patient Reported Outcomes With Clinical Cancer Registry Data: A Feasibility Study of the Electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) System

Traditionally, cancer registries have been used to record incidence, prevalence, and survival using data collected prospectively for all cancer patients.

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):e230

Download 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):e18282

Download 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):e361

Download Citation: END BibTex RIS

Long-Term Opioid Therapy in Spine Center Outpatients: Protocol for the Spinal Pain Opioid Cohort (SPOC) Study

The patient could identify the area of pain on the screen and choose between neck pain, midback pain, and lower back pain.

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):e21380

Download Citation: END BibTex RIS