Jove
Visualize
Contact Us
JoVE
x logofacebook logolinkedin logoyoutube logo
ABOUT JoVE
OverviewLeadershipBlogJoVE Help Center
AUTHORS
Publishing ProcessEditorial BoardScope & PoliciesPeer ReviewFAQSubmit
LIBRARIANS
TestimonialsSubscriptionsAccessResourcesLibrary Advisory BoardFAQ
RESEARCH
JoVE JournalMethods CollectionsJoVE Encyclopedia of ExperimentsArchive
EDUCATION
JoVE CoreJoVE BusinessJoVE Science EducationJoVE Lab ManualFaculty Resource CenterFaculty Site
Terms & Conditions of Use
Privacy Policy
Policies

Related Concept Videos

Intellectual Disability01:29

Intellectual Disability

719
Intellectual disability (ID) is a neurodevelopmental condition characterized by deficits in intellectual and adaptive functioning that manifest during the developmental period. This condition encompasses challenges in reasoning, memory, problem-solving, and learning, accompanied by impairments in everyday life skills, such as communication, self-care, and social interactions. Intellectual disability affects approximately 1% of the population in the United States, impacting an estimated 5...
719
Classifying Matter by State02:49

Classifying Matter by State

103.0K
Chemistry is the study of matter and the changes it undergoes. Matter is anything that has mass and occupies space. Matter is all around us; the air, water, soil, mountains, even our bodies are all examples of matter. Matter is divided into three states — solid, liquid, and gas — that are commonly found on earth. The fourth state of matter, plasma, occurs naturally in the interiors of stars. 
103.0K
The Nucleosome Core Particle02:10

The Nucleosome Core Particle

14.4K
Nucleosomes are the DNA-histone complex, where the DNA strand is wound around the histone core. The histone core is an octamer containing two copies of H2A, H2B, H3, and H4 histone proteins.
The paradox
Nucleosomes, paradoxically, perform two opposite functions simultaneously. On the one hand, their main responsibility is to protect the delicate DNA strands from physical damage and help achieve a higher compaction ratio. While on the other hand, they must allow polymerase enzymes to access DNA...
14.4K
Learning Disabilities01:25

Learning Disabilities

602
Learning disabilities are cognitive disorders caused by neurological impairments that affect cognitive functions like language and reading, without indicating overall intellectual or developmental challenges. These disabilities differ from global intellectual or developmental disabilities as they are limited to distinct cognitive functions. Common learning disabilities include dysgraphia, dyslexia, and dyscalculia, each of which impacts unique aspects of learning.
Dyslexia
Dyslexia is a...
602
Data Reporting and Recording01:24

Data Reporting and Recording

5.4K
Reporting and recording are crucial in data documentation. The timely, thorough, and accurate documentation of facts is essential when recording patient data. Failure to record findings during an assessment or interpretation of a problem will result in loss of information and make the patient document unreliable. The reader is left with general impressions if the information is not specific. A recording is documenting data of the individual's health information in a traceable, secure, and...
5.4K
Classifying Matter by Composition03:35

Classifying Matter by Composition

90.2K
Matter: Pure Substances and Mixtures
According to its composition, the matter can be classified into two broad categories — pure substances and mixtures. 
A pure substance is a form of matter that has a constant composition throughout with uniform properties. For example, any sample of sucrose has the same composition and same physical properties, such as melting point, color, and sweetness, regardless of the source from which it is isolated. 
A mixture is composed of two or...
90.2K

You might also read

Related Articles

Articles linked to this work by shared authors, journal, and citation graph.

Sort by
Same author

The pandemic generation: Investigating the long-term impact of a large-scale stressor on the anxiety of children.

JCPP advances·2026
Same author

Development of a Core Patient-Reported Outcome (Measures) Set for Pediatric Physical Therapy.

Pediatric physical therapy : the official publication of the Section on Pediatrics of the American Physical Therapy Association·2026
Same author

PROMIS Computerized Adaptive Testing Demonstrates Strong Convergent Validity and Lower Patient Burden Compared With Legacy Instruments in Foot and Ankle Fracture Care.

Foot & ankle orthopaedics·2026
Same author

Shared decision-making in pediatric physical therapy: A qualitative study among adolescents, parents, and physical therapists.

PloS one·2026
Same author

Immunosuppression in down syndrome regression disorder: a prospective observational cohort study.

Brain communications·2026
Same author

From framework to practice: applying the proteus-practice framework to learn lessons for integrating PROs in clinical care.

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation·2026

Related Experiment Video

Updated: Jan 29, 2026

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
06:16

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting

Published on: June 6, 2020

4.2K

What Matters Most? Developing a Core Patient Reported Outcome Set for Individuals With Genetic Intellectual

Nadia Y van Silfhout1,2,3,4,5, Maud M van Muilekom1,3,4,5, Leonie A Menke2,3,5

  • 1Emma Children's Hospital, Department of Child and Adolescent Psychiatry & Psychosocial Care, Amsterdam UMC Location University of Amsterdam, Amsterdam, the Netherlands.

Journal of Intellectual Disability Research : JIDR
|January 28, 2026
PubMed
Summary

This study identified 19 key patient-reported outcomes (PROs) for individuals with genetic intellectual disabilities (GID). This core PRO set will improve care and research by standardizing the measurement of patient perspectives in GID populations.

Keywords:
Delphi studyintellectual disabilitiespatient reported outcome measurespatient reported outcomesrare genetic neurodevelopmental disorders

More Related Videos

Spotting Cheetahs: Identifying Individuals by Their Footprints
09:47

Spotting Cheetahs: Identifying Individuals by Their Footprints

Published on: May 1, 2016

15.3K
Whole-body PET/MRI of Pediatric Patients: The Details That Matter
10:02

Whole-body PET/MRI of Pediatric Patients: The Details That Matter

Published on: December 19, 2017

15.3K

Related Experiment Videos

Last Updated: Jan 29, 2026

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
06:16

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting

Published on: June 6, 2020

4.2K
Spotting Cheetahs: Identifying Individuals by Their Footprints
09:47

Spotting Cheetahs: Identifying Individuals by Their Footprints

Published on: May 1, 2016

15.3K
Whole-body PET/MRI of Pediatric Patients: The Details That Matter
10:02

Whole-body PET/MRI of Pediatric Patients: The Details That Matter

Published on: December 19, 2017

15.3K

Area of Science:

  • Genetics and Developmental Disabilities
  • Patient-Reported Outcomes Research
  • Healthcare Quality Improvement

Background:

  • Improving care and research for individuals with genetic intellectual disabilities (GID) necessitates identifying and measuring relevant patient-reported outcomes (PROs).
  • Current practices often involve measuring numerous potentially irrelevant PROs for the GID population.
  • A standardized approach is needed to capture the patient perspective on health status effectively.

Purpose of the Study:

  • To identify the most relevant PROs for individuals with GID.
  • To develop a generic core PRO set applicable to the entire GID population.
  • To establish a framework for guiding care, research, and policymaking in GID.

Main Methods:

  • A comprehensive literature review and qualitative study identified initial PROs.
  • A pilot generic core PRO set was developed with an expert group.
  • Two rounds of Delphi surveys with individuals with GID, caregivers, and experts were conducted.
  • Consensus meetings were held to finalize the PRO set.

Main Results:

  • A total of 61 participants (12 individuals with GID, 21 caregivers, 28 experts) were involved.
  • Consensus was reached on a final generic core PRO set comprising 19 PROs.
  • These PROs cover various domains including fatigue, sleep, functioning, quality of life, communication, and mental health.

Conclusions:

  • The study successfully identified and established a relevant core PRO set for the GID population.
  • This GID core PRO set serves as a crucial framework for future care, research, and policy.
  • The next step involves selecting and validating patient-reported outcome measures (PROMs) to assess these identified PROs.