Research Task Forces
PLMS Scoring Standards
Chairs: Stephanie Fulda (Switzerland), Raffaele Ferri (Italy)
Assessment of MCID for the IRLS
Members:
- Ravi Gupta (India)
- John Winkelman (USA)
- Raffaele Ferri (Italy)
- Garima Shukla (Canada)
- Gulcin Benbir (Turkey)
- Karen Spruyt (France)
Determining Minimal Clinically Important Difference (MCID) for RLS, based on the patient reported measure (e.g., Patient Global Improvement (PGI-I)) is essential for planning clinical trials and informing clinical practice. This task force plans to determine the MCID by comparing the difference between baseline and follow-up IRLS total scores with self-reported improvement on PGI-I scale at follow-up evaluations, using patient-level data from previously published randomized control trials. MCID shall be determined using anchor-based methods as well as distribution based methods after controlling for between study variability, confounders. This project will help to understand the impact of treatment of RLS in clinical trials.
Pediatric PLMD
Chair: Lourdes DelRosso (USA)
Future of RLS
Chair: Diego Garcia-Borreguero (Spain)
Neuromodulation Stimulation
Chairs: Mauro Manconi (Switzerland), Cornelius Bachmann (Germany)
RLS Phenotyping
Chair: Elias G. Karroum (USA), Maria Paola Mogavero (Italy)
Members:
- Christopher Earley (USA)
- Raffaele Ferri (Italy), Ravi Gupta (India)
- Yuichi Inoue (Japan)
- Ki-Young Jung (Korea)
- Garima Shukla (Canada)
- Rosalia Silvestri (Italy)
- Ambra Stefani (Austria)
- John Winkelman (USA)
This task force brings together experts from across Europe, the Americas, and Asia dedicated to the stratification of Restless Legs Syndrome (RLS) phenotypes, aiming to identify and classify the diverse clinical presentations of RLS in adults. The global membership of this taskforce ensures a diverse and global perspective on the complexity of RLS phenotypes. This initiative officially launched in March 2025; however, task force members have long-standing experience in clinical practice and research, contributing to the understanding of RLS phenotypes over the year.
The goal of this task force is to develop a comprehensive classification system for RLS phenotypes based on key dimensions such as motor versus sensory symptomatology, as well as variables like sex, age, disease progression, genetic and biological markers, family history, socio-cultural and ethnic background, and comorbidities.
PLMD in Adults
Chair: Stephanie Fulda (Switzerland)
Periodic Limb Movement Disorder (PLMD) has been recognized as a distinct sleep disorder since 1979, yet research has remained limited, partly due to the substantial evolution of the diagnostic criteria over this time. The IRLSSG appointed task force on PLMD in adults has the aim to identify key barriers and propose practical solutions to help reinvigorate research into PLMD. To this purpose we have developed Research Diagnostic Criteria (RDC) for PLMD in adults that provide detailed operationalizations of the core diagnostic elements —frequent periodic movements during sleep (PLMS), clinically significant day or nighttime impairment, exclusion of key comorbid conditions (restless legs syndrome, untreated sleep-related breathing disorders, narcolepsy, and REM sleep behavior disorder), and a demonstrated cause-and-effect relationship—as well a six-level classification system to support graded reporting of PLMD status in research, from “No PLMS, no PLMD” to “Definite PLMD.” We believe that PLMD warrants systematic, high-quality research to enhance our understanding of the disorder and its treatment, and hope that the implementation of our proposed RDC and research agenda will bring us a step closer to developing a solid research foundation for PLMD.
Pediatric Phenotyping
Advisor: Dan Picchietti
IRLSSG Members:
- Lourdes DelRosso (USA)
- Arthur Walters (USA)
- Denise Sharon (USA)
- Gulcin Benbir (Turkey)
IPSA Members:
- Amalia Geller
- Paul Gringas
- Oliviero Bruni
- Narong Simakajornboon
- Cristiane Fumo
A joint effort between IRLSSG and the International Pediatric Sleep Association (IPSA), this task force recognizes that pediatric RLS remains underdiagnosed and undertreated due to evolving diagnostic criteria, the challenge of recognizing symptoms in younger children, and limited phenotypic characterization across developmental stages.
The current adult RLS criteria do not fully account for the nuanced presentation of RLS in children, such as behavioral manifestations, developmental language differences, and frequent misattribution to growing pains or ADHD.
Pediatric RLS is commonly misdiagnosed due to its overlap with other disorders such as ADHD or periodic limb movement disorder (PLMD). A developmental approach is necessary to capture symptom expression, particularly in children with limited verbal capacity. Phenotypic variability may also relate to developmental stage, iron status, genetic predisposition, and comorbid sleep or neurodevelopmental disorders. There is an urgent need to define and standardize pediatric RLS phenotypes to improve diagnosis, clinical trails, and personalized treatment startegies.
Aims:
- Conduct a comprehensive literature review to evaluate existing evidence supporting distinct pediatric RLS phenotypes and identify gaps in current knowledge.
- Characterize developmental phenotypes of pediatric RLS from infancy through adolescence, including age-specific symptom presentation, severity, and functional impact.
- Identify clinical correlates and biomarkers, including genetic, neurophysiologic, and sleep architecture patterns, associated with distinct RLS phenotypes.
- Develop a roadmap for future research, including phenotypic classification for use in international registries and therapeutic trials.
Inter-reliability of Scoring
Chairs: Raffaele Ferri (Italy), Stephanie Fulda (Switzerland)