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Participate in Research CP Dystonia Edition

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Research CP is an initiative to set a patient-centered research agenda for cerebral palsy. Go to our Research CP page to learn more.

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We will email you when we have new studies available or with research news or significant changes to MyCP. You can change this setting at anytime in your profile in MyCP.org.

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This field is how your name will be displayed in discussions on our forum. Feel free to remain anonymous with this ID or to choose something informal or formal. Our forum is not public so this name will only be seen by other forum members and is not indexed by search engines.

Primary Reason for Joining MyCP *

I am a person with CP or a caregiver to a person with CP

I am a clinician scientist who treats people with CP

I am a research scientist who studies CP

I am an advocate for people with CP

I am an industry person

MyCP Referrer

Cerebral Palsy Characteristics

These three characteristics are essential to determining which studies/surveys you will be offered.

CP Distribution *

Please select which ever option best describes the limbs affected by CP.

Primary CP diagnosis *

What is the movement disorder/tone diagnosis for the person with CP? Check all that apply. (For a brief description of the different types, visit the CDC site.)

Gross Motor Function Classification System (GMFCS) - Children Aged 2 to less than 4 Years

Please read the following and select the option that best describes your child’s movement abilities. Why are these questions important?

My Child ...

Has difficulty controlling head and trunk posture in most positions
and uses specially adapted seating to sit comfortably
and has to be lifted by another person to move about

Can sit on own when placed on the floor and can move within a room
and uses hands for support to maintain sitting balance
and usually uses adaptive equipment for sitting and standing
and moves by rolling, creeping on stomach or crawling

Can sit on own and walk short distances with a walking aid (such as a walker, rollator, crutches, canes, etc.)
and may need help from an adult for steering and turning when walking with an aid
and usually sits on floor in a "W-sitting" position and may need help from an adult to get into sitting
and may pull to stand and cruise short distances
and prefers to move by creeping and crawling

Can sit on own and usually moves by walking with a walking aid
and may have difficulty with sitting balance when using both hands to play
and can get in and out of sitting positions on own
and can pull to stand and cruise holding onto furniture
and can crawl, but prefers to move by walking

Can sit on own and moves by walking without a walking aid
and is able to balance in sitting when using both hands to play
and can move in and out of sitting and standing positions without help from an adult
and prefers to move by walking

Gross Motor Function Classification System (GMFCS) - Children Aged 4 to less than 6 Years

Please read the following and select the option that best describes your child’s movement abilities. Why are these questions important?

My Child ...

Has difficulty sitting on their own and controlling their head and body posture in most positions
and has difficulty achieving any voluntary control of movement
and needs a specially-adapted supportive chair to sit comfortably
and has to be lifted or hoisted by another person to move

Can sit on their own but does not stand or walk without significant support and adult supervision
and may need extra body / trunk support to improve arm and hand function
and usually needs adult assistance to get in and out of a chair
and may achieve self-mobility using a powered wheelchair or is transported in the community

Can walk on their own using a walking aid (such as a walker, rollator, crutches, canes, etc.)
and can usually get in and out of a chair without adult assistance
and may use a wheelchair when travelling long distances or outside
and finds it difficult to climb stairs or walk on an uneven surface without considerable help

Can walk on their own without using a walking aid, but has difficulty walking long distances or on uneven surfaces
and can sit in a normal adult chair and use both hands freely
and can move from the floor to standing without adult assistance
and needs to hold the handrail when going up or down stairs
and is not yet able to run and jump

Can walk on their own without using a walking aid, including fairly long distances, outdoors
and on uneven surfaces
and can move from the floor or a chair to standing without using their hands for support
and can go up and down stairs without needing to hold the handrail
and is beginning to run and jump

Gross Motor Function Classification System (GMFCS) - Children Aged 6 to less than 12 Years

Please read the following and select the option that best describes your child’s movement abilities. Why are these questions important?

My Child ...

Has difficulty sitting on their own and controlling their head and body posture in most positions
and has difficulty achieving any voluntary control of movement
and needs a specially supportive chair to sit comfortably
and has to be lifted or hoisted by another person to move

Can sit on their own but does not stand or walk without significant support
and therefore relies mostly on wheelchair at home, school and in the community
and often needs extra body / trunk support to improve arm and hand function
and may achieve self-mobility using a powered wheelchair

Can stand on their own and only walks using a walking aid (such as a walker, rollator, crutches, canes, etc.)
and finds it difficult to climb stairs, or walk on uneven surfaces
and may use a wheelchair when travelling for long distances or in crowds

Can walk on their own without using walking aids, but needs to hold the handrail when going up or down stairs
and often finds it difficult to walk on uneven surfaces, slopes or in crowds

Can walk on their own without using walking aids, and can go up or down stairs without needing to hold the handrail
and walks wherever they want to go (including uneven surfaces, slopes or in crowds)
and can run and jump although their speed, balance, and coordination may be slightly limited

Gross Motor Function Classification System (GMFCS) - Young People Aged 12 to 18 Years

Please read the following and select the option that best describes your child’s movement abilities. Why are these questions important?

My Child ...

Has difficulty sitting on their own and controlling their head and body posture in most positions
and has difficulty achieving any voluntary control of movement
and needs a specially adapted chair to sit comfortably and be transported anywhere
and has to be lifted or hoisted by another person or special equipment to move

Can sit with some pelvic and trunk support but does not stand or walk without significant support
and therefore always relies on wheelchair when outdoors
and can achieve self-mobility using a powered wheelchair
and can crawl or roll to a limited extent to move around indoors

Can stand on their own and only walks using a walking aid (such as a walker, rollator, crutches, canes, etc.)
and finds it difficult to climb stairs, or walk on uneven surfaces without support
and uses a variety of means to move around depending on the circumstances
and prefers to use a wheelchair to travel quickly or over longer distances

Can walk on their own without using walking aids, but needs to hold the handrail when going up or down stairs
and therefore walks in most settings
and often finds it difficult to walk on uneven surfaces, slopes or in crowds
and may occasionally prefer to use a walking aid (such as a cane or crutch) or a wheelchair to travel quickly or over longer distances

Gross Motor Function Classification System (GMFCS) - Young People Aged 12 to 18 Years

Please read the following and select the option that best describes your movement abilities. Why are these questions important?

I ...

Have difficulty sitting on my own and controlling my head and body posture in most positions
and have difficulty achieving any voluntary control of movement
and need a specially adapted chair to sit comfortably and be transported anywhere
and have to be lifted or hoisted by another person or special equipment to move

Can sit on my own but do not stand or walk without significant support
and therefore always rely on wheelchair when outdoors
and can achieve self-mobility using a powered wheelchair
and can crawl or roll to a limited extent to move around indoors

Can stand on my own and only walk using a walking aid (such as a walker, rollator, crutches, canes, etc.)
and find it difficult to climb stairs, or walk on uneven surfaces without support
and use a variety of means to move around depending on the circumstances
and prefer to use a wheelchair to travel quickly or over longer distances

Can walk on my own without using walking aids, but need to hold the handrail when going up or down stairs
and therefore walk in most settings
and often find it difficult to walk on uneven surfaces, slopes or in crowds
and may occasionally prefer to use a walking aid (such as a cane or crutch) or a wheelchair to travel quickly or over longer distances

Can walk on my own without using walking aids, and can go up or down stairs without needing to hold the handrail
and walk wherever I want to go (including uneven surfaces, slopes or in crowds)
and can run and jump although my speed, balance, and coordination may be limited

Gross Motor Function Classification System (GMFCS) - Adults

Gross Motor Function Classification System (GMFCS) *

Based on the descriptions on the right, select the Gross Motor Function Classification System (GMFCS) that most closely aligns with the motor abilities of the person with CP.

Full Name *

University Affiliation

Hospital Affiliation

Research Focus Areas

Full Name *

Organization Name

Role at organization

Executive Director, CEO, Communications Director, Community Outreach, etc.

Organizational Mission

Full Name *

Company Name

Your Title

Commercial interests

(e.g., pharmaceutical, medical devices, technology development)

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Join My Cerebral Palsy

Demographics

Cerebral Palsy Characteristics

Gross Motor Function Classification System (GMFCS) - Children Aged 2 to less than 4 Years

Gross Motor Function Classification System (GMFCS) - Children Aged 4 to less than 6 Years

Gross Motor Function Classification System (GMFCS) - Children Aged 6 to less than 12 Years

Gross Motor Function Classification System (GMFCS) - Young People Aged 12 to 18 Years

Gross Motor Function Classification System (GMFCS) - Young People Aged 12 to 18 Years

Gross Motor Function Classification System (GMFCS) - Adults