The first iteration of the Rare Disease COA Resource focuses on the assessment of daily function subdomains of gross motor function, fine motor function and self-care and communication/language in pediatric, non-oncologic populations. These domains and subdomains are defined below. A list of selected COAs for inclusion in the Resource follows.
Domain: Daily function
Common, everyday actions and behaviors involving functional ability that children display to show growing independence and mastery of skills.
- Fine motor function – Fine motor skills are involved in smaller movements that occur in the wrists, hands, fingers, feet, and toes. They involve smaller actions such as picking up objects between the thumb and finger, writing carefully, and even blinking.
- Gross motor function – Gross motor (physical) skills are those which require whole body movement, and which involve the large (core stabilizing) muscles of the body to perform everyday functions, such as standing and walking, running and jumping, and sitting upright at the table. They also include eye-hand coordination skills such as ball skills (throwing, catching, kicking) as well as riding a bike or a scooter and swimming.
- Self-care – Ability to perform daily skills and adaptive behaviors involved in caring for oneself with increasing independence. Tasks may include eating or drinking, dressing, bathing, toileting, disease management, and general mobility in the home, community, and school environment.
- Communication/language – Includes aspects of both receptive and expressive language, oral and written language, gestures, signs of dysarthria (muscles used for speech are weak resulting in speech that is difficult to understand), apraxia of speech (loss or impairment of ability to execute coordinated movements to produce speech), and articulation (the formation of clear and distinct sounds in speech). Sensory and motor/somatic (voluntary control of body movements) issues related to communication that should be included in the assessment: dysarthria, apraxia of speech, vision, hearing, facial expression, articulation.
The table below lists tools currently included in the Resource. To apply filters, enter or select the desired input into the field at the top of each column (i.e., instrument name, abbreviation, COA type, and/or subdomain).
Current COAs and their associated characteristics may also be exported in .csv format by clicking the “Export” button, below.