Related Experiment Video

Updated: Jun 29, 2025

Eye Tracking Young Children with Autism
09:03

Eye Tracking Young Children with Autism

Published on: March 27, 2012

45.6K

How can trial designs better serve the needs of children and young people with juvenile idiopathic arthritis?

Freya Luling Feilding1, Laura Crosby2, Emily Earle3

  • 1Infection Immunity and Inflammation Research and Teaching Department, UCL Great Ormond Street Institute of Child Health, London, UK.

The Lancet. Rheumatology
|March 29, 2024
PubMed

Insights

Clinical trials for juvenile idiopathic arthritis (JIA) treatments need reform. Current designs, particularly withdrawal trials, raise ethical concerns and fail to meet patient and clinician needs for evidence-based, patient-centered care.

Area of Science:

  • Pediatric Rheumatology
  • Clinical Trial Design
  • Patient-Centered Care

Background:

  • Significant advancements in biologic and small molecule treatments for juvenile idiopathic arthritis (JIA) have improved patient outcomes over the last two decades.
  • Designing clinical trials for JIA therapeutics presents considerable ethical, legislative, and practical challenges.
  • Current clinical trial designs in JIA often inadequately address the needs of both patients and clinicians.

Purpose of the Study:

  • To present the perspective of a patient and parent network regarding the shortcomings of current JIA clinical trial designs.
  • To highlight the ethical concerns associated with commonly used withdrawal trial designs in JIA research.
  • To advocate for necessary changes in JIA clinical trial methodologies, informed by the lived experiences of patients and families.

Main Methods:

  • This is a viewpoint piece, not a research study.
  • It synthesizes the personal views and experiences of a patient and parent network involved in juvenile idiopathic arthritis.
  • The content focuses on qualitative insights into the perceived failures of current clinical trial designs.

Main Results:

  • Withdrawal trial designs in JIA are viewed as ethically problematic by patients and families.
  • These designs are perceived as hindering evidence-based and patient-centered decision-making regarding medication.
  • There is a strong consensus among the patient and parent network that current trial designs are failing children and young people with JIA.

Conclusions:

  • Current clinical trial designs in juvenile idiopathic arthritis are not meeting the needs of patients and clinicians.
  • There is a critical need to reform trial methodologies to be more ethical, patient-centered, and aligned with lived experiences.
  • Future clinical trial designs should prioritize patient well-being and facilitate informed decision-making in JIA treatment.

More Related Videos

A Clinical Trial Assessing the Safety, Efficacy, and Delivery of Olive-Oil-Based Three-Chamber Bags for Parenteral Nutrition00:04

A Clinical Trial Assessing the Safety, Efficacy, and Delivery of Olive-Oil-Based Three-Chamber Bags for Parenteral Nutrition

Published on: September 20, 2019

10.7K
Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting06:16

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting

Published on: June 6, 2020

3.7K

Related Concept Videos

Crossover Experiments01:16

Crossover Experiments

Crossover experiments, also called the repeated-measurements design, is a study design in which all experimental units are exposed to all treatments in different periods. Crossover experiments are generally used in psychology, the pharmaceutical industry, agriculture, and medicine.
Crossover designs are performed even with smaller sample sizes since the samples can act as their controls. These are better than simple randomized trials since patients are exposed to all the treatments.
2.8K
Types of Biopharmaceutical Studies: Controlled and Non-Controlled Approaches01:23

Types of Biopharmaceutical Studies: Controlled and Non-Controlled Approaches

Biopharmaceutical studies constitute a vital field aiming to enhance drug delivery methods and refine therapeutic approaches, drawing upon diverse interdisciplinary knowledge. In research methodologies, the choice between controlled and non-controlled studies significantly influences the study's reliability and accuracy.
Non-controlled studies, commonly employed for initial exploration, lack a control group, rendering them susceptible to biases and external influences. In contrast,...
126
Study Designs in Epidemiology01:20

Study Designs in Epidemiology

Epidemiological study designs are fundamental tools for investigating the distribution, determinants, and control of health conditions in populations. They help researchers understand the relationships between exposures and outcomes, and they broadly fall into two categories: "observational" and "experimental" studies.
Observational studies are those where the researcher does not intervene but rather observes natural variations. They include cross-sectional, cohort, and...
215
Blinding01:11

Blinding

Blinding is a commonly used method of not telling participants which treatment a subject is receiving. Blinding is a critical part of a randomized control trial or RCT. It reduces the bias that affects the results. In an RCT, blinding is used in the form of a placebo. A placebo effect occurs when untreated subjects falsely believe they have received the treatment and report improved symptoms. A placebo or a dummy treatment is administered to subjects to negate the bias caused by such an effect.
2.4K