🧬 Genetic Disorder

Coffin-Lowry Syndrome

Also known as: CLS, Mental Retardation with Facial and Digital Anomalies, Fifth Digit Syndrome

Coffin-Lowry syndrome (CLS) is a rare genetic disorder characterized by intellectual disability, distinctive facial features, skeletal abnormalities, and growth retardation. It primarily affects males, with females typically exhibiting milder symptoms. The syndrome is caused by mutations in the RPS6KA3 gene, which plays a crucial role in cell signaling and brain development.

👥 1 in 50,000 to 100,000 live births Prevalence
🔬 5 Active Trials

Coffin-Lowry Syndrome is a rare problem that makes it hard for your brain to learn and your body to grow normally. It changes how your face looks and can make your bones a little different. Doctors and therapists can help you learn and be as healthy as possible.

Signs & Symptoms

  • Intellectual disability (moderate to severe)
  • Distinctive facial features (e.g., prominent forehead, hypertelorism, thick lips)
  • Skeletal abnormalities (e.g., kyphoscoliosis, pectus excavatum)
  • Growth retardation
  • Tapered fingers with short, broad thumbs
  • Hypotonia (muscle weakness)
  • Hearing loss
  • Cardiac anomalies (less common)
  • Behavioral problems (e.g., hyperactivity, aggression)

Treatment Options

THERAPY

Educational and behavioral therapies

SUPPORTIVE
THERAPY

Physical therapy

SUPPORTIVE
THERAPY

Speech therapy

SUPPORTIVE
THERAPY

Occupational therapy

SUPPORTIVE
MEDICATION FDA Approved

Medications for behavioral problems (e.g., ADHD)

MODERATELY EFFECTIVE
SURGERY

Surgical correction of skeletal abnormalities (e.g., scoliosis)

MODERATELY EFFECTIVE
SUPPORTIVE

Management of cardiac anomalies

SUPPORTIVE

Diagnosis

  • Clinical evaluation
  • Physical examination
  • Radiological studies (X-rays)
  • Genetic testing (RPS6KA3 gene sequencing)
  • Molecular Genetic Testing

History

Coffin-Lowry syndrome was first described independently by Dr. Grange S. Coffin in 1966 and Dr. Robert Lowry in 1971. The genetic basis of the syndrome was identified in 1996 with the discovery of mutations in the RPS6KA3 gene.

Recent Breakthroughs

2022

Novel therapeutic targets for Coffin-Lowry Syndrome identified through iPSC-derived neuronal models

Research using induced pluripotent stem cells (iPSCs) derived from individuals with CLS has identified potential therapeutic targets for improving neuronal function and cognitive outcomes. Specifically, modulation of specific signaling pathways downstream of RSK2 showed promise in preclinical studies.

2023

Longitudinal study reveals progression of skeletal abnormalities in Coffin-Lowry Syndrome

A longitudinal study tracking skeletal changes in individuals with CLS over several years has provided valuable insights into the progression of kyphoscoliosis and other skeletal abnormalities. This information can help guide orthopedic management and improve patient outcomes.