Intellectual disability

Common Name(s)

Intellectual disability, Intellectual developmental disorder, Mental retardation

Intellectual disability, formerly known as mental retardation, is a condition that is apparent before the age of 18 and consists of both below-average intellectual functioning and adaptive behavior. There are a number of causes of intellectual disability. Our understanding of the causes of intellectual disability focuses on the types of risk factors (biomedical, social, behavioral, and educational) and the timing of exposure (before, during, or after birth) to those factors.

Intellectual disability is often diagnosed during early childhood or the early school years. To make a diagnosis of intellectual disability, a psychologist or physician will use measures of intellectual functioning (mental capacity for learning, reasoning, problem solving, and so on, often known as an “IQ test”) and adaptive behavior, including skills related to using concepts (such as language, money, or time), social skills, and those practical skills needed to take care of one’s self.

There are many sources of information and support for people with intellectual disability and their families.

Source: American Association on Intellectual and Developmental Disabilities

Source: Advocacy organizations associated with the condition.

 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Intellectual disability" for support, advocacy or research.

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CNS Foundation

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

Last Updated: 12 Oct 2013

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Mowat Wilson Support

We are a support group and website where families can share information about Mowat-Wilson Syndrome. Our website includes support group information, a forum, photos and profiles of children with MWS and parent survey pages. We want to help inform the public about this rare condition and to help those affected by it not feel so alone by giving them a place to exchange information and experiences with others in the same situation.

Last Updated: 6 Mar 2014

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VOR-Speaking up for people with intellectual & developmental disabilities

VOR is a national organization advocating for high quality care and human rights for all people with intellectual and developmental disabilities.

Last Updated: 29 Apr 2014

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General Support Organizations

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How do you compare to others with this condition?

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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 "Intellectual disability" for support, advocacy or research.

Logo
CNS Foundation

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

http://www.cnsfoundation.org

Last Updated: 12 Oct 2013

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Mowat Wilson Support

We are a support group and website where families can share information about Mowat-Wilson Syndrome. Our website includes support group information, a forum, photos and profiles of children with MWS and parent survey pages. We want to help inform the public about this rare condition and to help those affected by it not feel so alone by giving them a place to exchange information and experiences with others in the same situation.

http://www.mowatwilson.org

Last Updated: 6 Mar 2014

View Details
VOR-Speaking up for people with intellectual & developmental disabilities

VOR is a national organization advocating for high quality care and human rights for all people with intellectual and developmental disabilities.

http://www.vor.net

Last Updated: 29 Apr 2014

View Details

 

General Support Organizations

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General Resources

Toolkit for Families

Advocacy resources for individuals with intellectual and developmental disabilities, including autism, and their families, guardians and advocates. Resources relate to residential choice, federal laws, cost comparisons, quality of care and more.

Updated 29 Apr 2014

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Toolkit for Legislators, Policymakers, and Officials

Advocacy resources for legislators and policymakers re: to developmental disabilities, including autism, Resources relate to residential choice, federal laws, cost comparisons, quality of care and more.

Updated 29 Apr 2014

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VOR Press Kit

VOR's 2014 Press Kit, a collection of written materials designed to introduce VOR to the media and others, is now available. For more information, please contact Julie Huso, Executive Director at jhuso@vor.net.

Updated 29 Apr 2014

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Olmstead Resources

The Supreme Court, in its landmark Olmstead v. L.C.n decision, recognized the need for a range of services, based on individual choice and need, which respond to the varied and unique needs of the entire disability community.

Updated 29 Apr 2014

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Learn About VOR

VOR's Mission, Policy and Positions, and more. Learn more about the only national non-profit organization advocating for high quality care and human rights based on individual choice and need.

Updated 29 Apr 2014

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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 "Intellectual disability" returned 236 free, full-text research articles on human participants. First 3 results:

The usefulness of array comparative genomic hybridization in clinical diagnostics of intellectual disability in children.
 

Author(s): Magdalena Bartnik, Barbara Wiśniowiecka-Kowalnik, Beata Nowakowska, Marta Smyk, Marta Kędzior, Katarzyna Sobecka, Anna Kutkowska-Kaźmierczak, Jakub Klapecki, Krzysztof Szczałuba, Jennifer Castanela, Paweł Własienko, Natalia Bezniakow, Ewa Obersztyn, Ewa Bocian

Journal: Dev Period Med. ;18(3):307-17.

 

Intellectual disability (ID)/Developmental delay (DD), which occurs in 1-3% of the population, accounts for a large number of cases regularly seen in genetics clinics. Currently, Array Comparative Genomic Hybridization (array CGH) is recommended by the International Standards for ...

Last Updated: 3 Sep 2014

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Copy number variants (CNVs) analysis in a deeply phenotyped cohort of individuals with intellectual disability (ID).
 

Author(s): Ying Qiao, Eloi Mercier, Jila Dastan, Jane Hurlburt, Barbara McGillivray, Albert E Chudley, Sandra Farrell, Francois P Bernier, Me Suzanne Lewis, Paul Pavlidis, Evica Rajcan-Separovic

Journal:

 

DNA copy number variants (CNVs) are found in 15% of subjects with ID but their association with phenotypic abnormalities has been predominantly studied in smaller cohorts of subjects with detailed yet non-systematically categorized phenotypes, or larger cohorts (thousands of cases) ...

Last Updated: 24 Jul 2014

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Array-CGH analysis in Rwandan patients presenting development delay/intellectual disability with multiple congenital anomalies.
 

Author(s): Annette Uwineza, Jean-Hubert Caberg, Janvier Hitayezu, Anne Cecile Hellin, Mauricette Jamar, Vinciane Dideberg, Emmanuel K Rusingiza, Vincent Bours, Leon Mutesa

Journal:

 

Array-CGH is considered as the first-tier investigation used to identify copy number variations. Right now, there is no available data about the genetic etiology of patients with development delay/intellectual disability and congenital malformation in East Africa.

Last Updated: 7 Aug 2014

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Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Intellectual disability" returned 39 free, full-text review articles on human participants. First 3 results:

Non-specialist psychosocial interventions for children and adolescents with intellectual disability or lower-functioning autism spectrum disorders: a systematic review.
 

Author(s): Brian Reichow, Chiara Servili, M Taghi Yasamy, Corrado Barbui, Shekhar Saxena

Journal: PLoS Med.. 2013 Dec;10(12):e1001572; discussion e1001572.

 

The development of effective treatments for use by non-specialists is listed among the top research priorities for improving the lives of people with mental illness worldwide. The purpose of this review is to appraise which interventions for children with intellectual disabilities ...

Last Updated: 20 Dec 2013

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Copy number variants are frequent in genetic generalized epilepsy with intellectual disability.
 

Author(s): Saul A Mullen, Gemma L Carvill, Susannah Bellows, Marta A Bayly, Holger Trucks, Dennis Lal, Thoman Sander, Samuel F Berkovic, Leanne M Dibbens, Ingrid E Scheffer, Heather C Mefford

Journal: Neurology. 2013 Oct;81(17):1507-14.

 

We examined whether copy number variants (CNVs) were more common in those with a combination of intellectual disability (ID) and genetic generalized epilepsy (GGE) than in those with either phenotype alone via a case-control study.

Last Updated: 22 Oct 2013

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Histone H3 lysine methylation in cognition and intellectual disability disorders.
 

Author(s): Sven Parkel, Jose P Lopez-Atalaya, Angel Barco

Journal:

 

Recent research indicates that epigenetic mechanisms and, in particular, the post-translational modification (PTM) of histones may contribute to memory encoding and storage. Among the dozens of possible histone PTMs, the methylation/demethylation of lysines in the N-terminal tail ...

Last Updated: 18 Sep 2013

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Symptoms, Diagnosis, and Treatment

There are currently no related results available in GeneReviews.

There are currently no related results available in Genetic Testing Registry.

 
 
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Clinical Trial Information This information is provided by ClinicalTrials.gov

Pivotal Response Treatment for Individuals With Intellectual Disabilities
 

Status: Recruiting

Condition Summary: Intellectual Disabilities; Speech Delay; Language Disorder

 

Last Updated: 19 Nov 2013

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Mental Health Care Provision for Adults With Intellectual Disability and a Mental Disorder
 

Status: Recruiting

Condition Summary: Mental Disorder; Intellectual Disability

 

Last Updated: 13 Mar 2014

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Last Updated: 9 May 2014

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