Phone: 800-926-4797 or 941-312-0400
Your membership provides this website - Join Today!



> About PWS
> Get Publications
 > About PWSA (USA)
Board of Directors
Adults with PWS Advisory
 Office Staff

   > Health Concerns
 > Medical Alert
> Psychiatric
> Diet Resources
> Growth Hormone

Research Grants
Funded Research

   > Participants Wanted
   > Research Topics
   > Scientific Advisory Board
   > Clinical Advisory Board

  > Spread Awareness
> Become member

 > Newly Diagnosis

 > For Families
> For Providers
Advisory Board
For Educators

   > State Chapters
   > Links and Resources





Early-onset Morbid Obesity (EMO) Recruitment through the PWS-EMO Rare Disease Natural History Study funded by NICHD

Background: Childhood obesity has become a health problem of epidemic proportions. The prevalence of obesity has been increasing significantly over the last three decades in every age group. However, the age group with the smallest increase are those children less than 4 years of age. This finding suggests that metabolic or genetic factors play a greater role than the environment in the development of obesity in young children. Many children who become obese before the age of 4 years are therefore referred to either genetics or endocrinology to evaluate for possible identifiable etiologies of their obesity. Very little is known about the etiology of early childhood obesity. A few genes have been described which can cause early childhood obesity, but the vast majority of patients are undiagnosed at this point.

Rationale: The diagnosis of PWS is often entertained in children who develop obesity early in life. We refer to individuals who develop obesity before the age of 4 years as the Early-onset Morbid Obesity (EMO) population. Many of the EMO children have similarities to PWS, including developmental delay, learning problems, and behavioral problems. However, several of the EMO children also have distinct differences from PWS, including tall stature, a large head circumference, lack of hypotonia, and lack of neonatal failure-to-thrive.

Specific Aim: To determine the natural history of Early-onset Morbid Obesity (EMO)/”Prader-Willi Like” patients with respect to birth history, medical problems, age of onset of obesity, appetite, learning difficulties, psychiatric/behavioral problems and physical features.

Inclusion/Exclusion criteria: The EMO group will be selected solely based on a documented medical chart history of their weight having exceeded 150% of Ideal Body Weight (IBW) or a Body Mass Index (BMI) of greater than the 97% before 4 years of age. Participants will be excluded from this part of the study if they have a chromosomal aneuploidy (i.e., an extra or missing whole chromosome) or Fragile X as the cause of their obesity. All EMO patients will have had a chromosomal (or a chromosomal microarray) analysis, DNA methylation testing for PWS, MC4R mutation analysis and a serum leptin prior to entry to the study.

Study Recruitment: Information about the participating research centers can be found at the following link:



edited: 04/11/2012

Return to Home page

PWSA(USA) Disclaimer 


Privacy Policy

PWSA (USA) Link Policy


 Email Webmaster