Related Experiment Video
Updated: Dec 12, 2025
A Method of Trigonometric Modelling of Seasonal Variation Demonstrated with Multiple Sclerosis Relapse Data
Published on: December 9, 2015
Review of response rates over time in registry-based studies using patient-reported outcome measures
Katherine Wang1,2, Cathrine N Eftang3, Rune Bruhn Jakobsen4,5
1University of Oslo Faculty of Medicine, Oslo, Norway wkath8@gmail.com.
Objectives:
Gain an overview of expected response rates (RRs) to patient-reported outcome measures (PROMs) in clinical quality registry-based studies and long-term cohorts in order to better evaluate the validity of registries and registry-based studies. Examine the trends of RRs over time and how they vary with study type, questionnaire format, and the use of reminders.
Design:
Literature review with systematic search.
Data Sources:
PubMed, MEDLINE, EMBASE, kvalitetsregistre.no, kvalitetsregister.se and sundhed.dk.
Eligibility Criteria:
Articles in all areas of medical research using registry-based data or cohort design with at least two follow-up time points collecting PROMs and reporting RRs. Annual reports of registries including PROMs that report RRs for at least two time points.
Primary Outcome Measure:
RRs to PROMs.
Results:
A total of 10 articles, 12 registry reports and 6 registry articles were included in the review. The overall RR at baseline was 75%±22.1 but decreased over time. Cohort studies had a markedly better RR (baseline 97%±4.7) compared with registry-based data at all time points (baseline 72%±21.8). For questionnaire formats, paper had the highest RR at 86%±19.4, a mix of electronic and paper had the second highest at 71%±15.1 and the electronic-only format had a substantially lower RR at 42%±8.7. Sending one reminder (82%±16.5) or more than one reminder (76%±20.9) to non-responders resulted in a higher RR than sending no reminders (39%±6.7).
Conclusions:
The large variation and downward trend of RRs to PROMs in cohort and registry-based studies are of concern and should be assessed and addressed when using registry data in both research and clinical practice.
More Related Videos
06:05The Participant-Reported Implementation Update and Score PRIUS: A Novel Method for Capturing Implementation-Related Data Over Time
Published on: February 19, 2021
06:55Inverse Probability of Treatment Weighting Propensity Score using the Military Health System Data Repository and National Death Index
Published on: January 8, 2020
Related Concept Videos
01:23Types of Biopharmaceutical Studies: Controlled and Non-Controlled Approaches
Non-controlled studies, commonly employed for initial exploration, lack a control group, rendering them susceptible to biases and external influences. In contrast,...
01:20Comparing the Survival Analysis of Two or More Groups
02:20Longitudinal Research
01:11Observational Studies
There are three types of observational studies – Prospective, retrospective, and cross-sectional.
Prospective Study
Prospective studies, also known as longitudinal or cohort studies, are carried out by collecting future data from groups sharing similar characteristics. One...
01:12Analysis of Population Pharmacokinetic Data
01:20Actuarial Approach
Consider the example of a high-risk surgical procedure with significant early-stage mortality. A two-year clinical study is conducted,...