Prader-Willi syndrome

Common Name(s)

Prader-Willi syndrome

Prader-Willi syndrome (PWS) is a genetic condition that affects many parts of the body. Infants with PWS have severe hypotonia (low muscle tone), feeding difficulties, and slow growth. In later infancy or early childhood, affected children typically begin to eat excessively and become obese. Other signs and symptoms often include short stature, hypogonadism, developmental delays, cognitive impairment, and distinctive behavioral characteristics such as temper tantrums, stubbornness, and obsessive-compulsive tendencies. PWS is caused by missing or non-working genes on chromosome 15. Most cases are not inherited and occur randomly. Rarely, a genetic change responsible for PWS can be inherited.
 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Prader-Willi syndrome" for support, advocacy or research.

Foundation for Prader-Willi Research

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome (PWS) through the advancement of research.

Last Updated: 5 Feb 2015

View Details
Logo
Pediatric Brain Foundation

Pediatric Brain Foundation's Mission is Three-fold: 1. Expedite scientific research to find treatments and cures for ALL of the more than 14 million children, in the U.S. alone, living with some form of neurological disorder 2. Provide families and health care professionals with up-to-date information and resources on the latest discoveries in pediatric neurology 3. Educate the public and public officials on the critical importance of funding pediatric neurological research

Last Updated: 22 Apr 2015

View Details
Prader-Willi Syndrome Association (USA)

Prader-Willi Syndrome Association (USA) is an organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome.

Last Updated: 13 Dec 2012

View Details
Prader-Willi Syndrome Association-Kansas

The Kansas Chapter of the Prader-Willi Syndrome Association USA is committed to assist each family in locating services, education, advocacy and literature. The Prader-Willi Syndrome Association - Kansas Chapter we’ll give you the attention and personal devotion you require every step of the way to assist in maintaining well being for your child with PWS. Prader-Willi Syndrome Association - Kansas is located in Wichita with a devoted team of parents also with children impacted by PWS. Let us put our experience to work helping you and your child.

Last Updated: 27 Apr 2013

View Details

 

General Support Organizations

Not finding the support you need? Show General Support Organizations

 
 
Top

How do you compare to others with this condition?

Privately answer questions about your health. Let resources, you select, come to you.

Anonymously share and see how your answers compare with others with this condition while privately providing key pieces of information to medical researchers, disease advocacy groups, and others ONLY YOU select to help speed up cures and better alternatives.

 
 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Prader-Willi syndrome" for support, advocacy or research.

Foundation for Prader-Willi Research

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome (PWS) through the advancement of research.

http://www.fpwr.org

Last Updated: 5 Feb 2015

View Details
Logo
Pediatric Brain Foundation

Pediatric Brain Foundation's Mission is Three-fold: 1. Expedite scientific research to find treatments and cures for ALL of the more than 14 million children, in the U.S. alone, living with some form of neurological disorder 2. Provide families and health care professionals with up-to-date information and resources on the latest discoveries in pediatric neurology 3. Educate the public and public officials on the critical importance of funding pediatric neurological research

http://www.pediatricbrainfoundation.org

Last Updated: 22 Apr 2015

View Details
Prader-Willi Syndrome Association (USA)

Prader-Willi Syndrome Association (USA) is an organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome.

http://www.pwsausa.org

Last Updated: 13 Dec 2012

View Details
Prader-Willi Syndrome Association-Kansas

The Kansas Chapter of the Prader-Willi Syndrome Association USA is committed to assist each family in locating services, education, advocacy and literature. The Prader-Willi Syndrome Association - Kansas Chapter we’ll give you the attention and personal devotion you require every step of the way to assist in maintaining well being for your child with PWS. Prader-Willi Syndrome Association - Kansas is located in Wichita with a devoted team of parents also with children impacted by PWS. Let us put our experience to work helping you and your child.

http://www.pwsa-kansas.org

Last Updated: 27 Apr 2013

View Details

 

General Support Organizations

Not finding the support you need? Show General Support Organizations

 
 
 
 
Top

Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Prader-Willi syndrome" returned 230 free, full-text research articles on human participants. First 3 results:

Reduced cortical complexity in children with Prader-Willi Syndrome and its association with cognitive impairment and developmental delay.
 

Author(s): Akvile Lukoshe, Anita C Hokken-Koelega, Aad van der Lugt, Tonya White

Journal:

 

Prader-Willi Syndrome (PWS) is a complex neurogenetic disorder with symptoms involving not only hypothalamic, but also a global, central nervous system dysfunction. Previously, qualitative studies reported polymicrogyria in adults with PWS. However, there have been no quantitative ...

Last Updated: 17 Sep 2014

Go To URL
Clinically important age-related differences in sleep related disordered breathing in infants and children with Prader-Willi Syndrome.
 

Author(s): Michal Cohen, Jill Hamilton, Indra Narang

Journal:

 

Sleep related disordered breathing (SDB) in pediatric Prader-Willi Syndrome is gaining increased attention due to the possible association of growth hormone therapy, SDB and sudden death. However data on the patterns of SDB and their management, particularly in infants in this population, ...

Last Updated: 1 Jul 2014

Go To URL
QOL in caregivers of Japanese patients with Prader-Willi syndrome with reference to age and genotype.
 

Author(s): Hiroshi Ihara, Hiroyuki Ogata, Masayuki Sayama, Aya Kato, Masao Gito, Nobuyuki Murakami, Yasuhiro Kido, Toshiro Nagai

Journal: Am. J. Med. Genet. A. 2014 Sep;164A(9):2226-31.

 

This study aimed to measure quality of life (QOL) of the primary family caregivers for patients with Prader-Willi syndrome (PWS). Comparisons were made between caregivers' QOL in regard to their dependents' genotype and age group. The participants with PWS consisted of 22 children ...

Last Updated: 15 Aug 2014

Go To URL

Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Prader-Willi syndrome" returned 12 free, full-text review articles on human participants. First 3 results:

Prader-Willi syndrome and growth hormone deficiency.
 

Author(s): Zehra Aycan, Veysel Nijat Baş

Journal: J Clin Res Pediatr Endocrinol. 2014 ;6(2):62-7.

 

Prader-Willi syndrome (PWS) is a rare multisystem genetic disorder demonstrating great variability with changing clinical features during patient's life. It is characterized by severe hypotonia with poor sucking and feeding difficulties in early infancy, followed by excessive eating ...

Last Updated: 17 Jun 2014

Go To URL
Long-term effects of recombinant human growth hormone therapy in children with Prader-Willi syndrome.
 

Author(s): Peter M Wolfgram, Aaron L Carrel, David B Allen

Journal: Curr. Opin. Pediatr.. 2013 Aug;25(4):509-14.

 

Recombinant human growth hormone (hGH) therapy in children with Prader-Willi syndrome (PWS) improves linear growth, body composition, physical strength and agility, and other metabolic parameters. These benefits must be weighed against potential adverse effects, including rare occurrences ...

Last Updated: 10 Jul 2013

Go To URL
GrowthHormone Research Society workshop summary: consensus guidelines for recombinant human growth hormone therapy in Prader-Willi syndrome.
 

Author(s): Cheri L Deal, Michèle Tony, Charlotte Höybye, David B Allen, Maïthé Tauber, Jens Sandahl Christiansen,

Journal: J. Clin. Endocrinol. Metab.. 2013 Jun;98(6):E1072-87.

 

Recombinant human GH (rhGH) therapy in Prader-Willi syndrome (PWS) has been used by the medical community and advocated by parental support groups since its approval in the United States in 2000 and in Europe in 2001. Its use in PWS represents a unique therapeutic challenge that includes ...

Last Updated: 3 Jun 2013

Go To URL
 
 
Top

Clinical Trial Information This information is provided by ClinicalTrials.gov

Oxytocin Trial in Prader-Willi Syndrome
 

Status: Recruiting

Condition Summary: Prader Willi Syndrome

 

Last Updated: 22 May 2015

Go to URL
Prader-Willi Syndrome Macronutrient Study
 

Status: Recruiting

Condition Summary: Prader Willi Syndrome; Syndromic Obesity; Childhood Obesity

 

Last Updated: 18 Nov 2014

Go to URL
Family-based Intervention for Youth With Prader-Willi Syndrome: The Active Play at Home Study
 

Status: Recruiting

Condition Summary: Prader Willi Syndrome; Childhood Obesity

 

Last Updated: 7 Feb 2014

Go to URL