Join MyCerebralPalsy Username * I find myself wanting to comment regarding my wealth of experiences, if for nothing else, to show, particularly younger folks, how to cope, what is possible and how well they really have it as compared to when I was growing up disabled in the 60’s and 70’s.” John B. – Retired I think this is an amazing platform with incredible potential to help and assist many. I’m excited to be here.” Christina Y. – Mom and webmaster Email * Do you want invitations to the MyCP Webinar Series? Yes! No, I'm already registered No In the MyCP Webinar Series, researchers present their work from the Cerebral Palsy Research Network to members of the CP community via Zoom. How did you hear about us? Clinic or Hospital Flyer CPRN Facebook Page CPRN Webinar CPRN Website Friend or word of mouth Instagram LinkedIn MyChart Link My Physician Twitter YouTube Other Facebook Page or Group Other Hospital Personnel Other Webpage Other Password * Enter Password Confirm Password * Confirm Password Display Name * 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, a parent or legal guardian to a minor 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 Demographics Please fill these important facts about the person with CP. We use these data to determine which surveys are appropriate for you. Relationship to the person with CP? * Parent Self Caregiver Spouse/Partner Sibling Other Relative Full Name The name as it appears on the birth certificate of the person with CP. It will not be displayed. We use it to create a unique ID but we do not store the name. It is not required but is recommended to support future research. Want to learn more? How should we refer to the person with CP? * E.g. "Will" or "Susan" Birth Date * Date of birth for the person with CP Age Gender * Female Male Transgender Female Transgender Male Gender Variant/Non Conforming Prefer Not to Answer Gender of the person with CP Race * African-American or Black American Indian or Alaskan Native Asian Hawaiian or other Pacific Islander White Not Reported Refused to Answer Unknown Race of the person with CP (check all that apply) Ethnicity * Yes No Is the person with CP Hispanic or Latino? Hospital for CP care AI duPont/Nemours Hospital for Children Akron Children’s Hospital Benioff Children's Hospital - Oakland (UCSF) Boston Children’s Hospital Children’s Hospital Colorado Children’s Mercy Hospital Children’s of Alabama Cincinnati Children’s Hospital Columbia University Weinberg Center Gillette Specialty Care Johns Hopkins Medicine Kennedy Krieger Institute Michigan Children’s Hospital Mt. Washington Pediatric Hospital Nationwide Children’s Hospital Phoenix Children’s Hospital Primary Children’s Hospital Rady Children’s Hospital (UCSD) Riley Children’s Hospital Seattle Children’s Hospital Shirley Ryan Ability Lab SickKids St. Louis Children’s Hospital Texas Children’s Hospital University of California — Los Angeles (UCLA) University of Michigan Medical Center University of New Mexico Hospital University of North Carolina — Chapel Hill University of Oklahoma Medical Center University of Virginia (UVA Health) UT Health — Houston Wolfson Children's Hospital (UF - Jacksonville) Yale School of Medicine Other Which one of these institutions, if any, is the primary place that you or your loved one is treated for cerebral palsy related medical needs? Why do we ask this? Other (non CP Research Network) Hospital Do you want to sign up for MENTOR? Yes No MENTOR (Mindfulness, Exercise, and Nutrition to Optimize Resilience) is a free eight week virtual course for adults with CP. Read more here. We will send you an email with more information and a form to sign-up. Cerebral Palsy Characteristics These three characteristics are essential to determining which studies/surveys you will be offered. CP Distribution * One side affected Both legs affected Both arms and both legs affected Both sides - right side predominant Both sides - left side predominant Unknown Please select which ever option best describes the limbs affected by CP. Primary CP diagnosis * Ataxic Athetoid Chorea Dystonic Hypotonic Mixed Rigid Spastic Unknown 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 positionsand uses specially adapted seating to sit comfortablyand has to be lifted by another person to move about Can sit on own when placed on the floor and can move within a roomand uses hands for support to maintain sitting balanceand usually uses adaptive equipment for sitting and standingand 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 aidand usually sits on floor in a "W-sitting" position and may need help from an adult to get into sittingand may pull to stand and cruise short distancesand prefers to move by creeping and crawling Can sit on own and usually moves by walking with a walking aidand may have difficulty with sitting balance when using both hands to playand can get in and out of sitting positions on ownand can pull to stand and cruise holding onto furnitureand can crawl, but prefers to move by walking Can sit on own and moves by walking without a walking aidand is able to balance in sitting when using both hands to playand can move in and out of sitting and standing positions without help from an adultand prefers to move by walking © Amy Dietrich, Kristen Abercrombie, Jamie Fanning, and Doreen Bartlett, 2007 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 positionsand has difficulty achieving any voluntary control of movementand needs a specially-adapted supportive chair to sit comfortablyand 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 supervisionand may need extra body / trunk support to improve arm and hand functionand usually needs adult assistance to get in and out of a chairand 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 assistanceand may use a wheelchair when travelling long distances or outsideand 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 surfacesand can sit in a normal adult chair and use both hands freelyand can move from the floor to standing without adult assistanceand needs to hold the handrail when going up or down stairsand is not yet able to run and jump Can walk on their own without using a walking aid, including fairly long distances, outdoorsand on uneven surfacesand can move from the floor or a chair to standing without using their hands for supportand can go up and down stairs without needing to hold the handrailand is beginning to run and jump © Claire Kerr and Brona McDowell, 2007 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 positionsand has difficulty achieving any voluntary control of movementand needs a specially supportive chair to sit comfortablyand has to be lifted or hoisted by another person to move Can sit on their own but does not stand or walk without significant supportand therefore relies mostly on wheelchair at home, school and in the communityand often needs extra body / trunk support to improve arm and hand functionand 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 surfacesand 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 stairsand 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 handrailand 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 © Chris Morris, 2007 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 positionsand has difficulty achieving any voluntary control of movementand needs a specially adapted chair to sit comfortably and be transported anywhereand 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 supportand therefore always relies on wheelchair when outdoorsand can achieve self-mobility using a powered wheelchairand 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 supportand uses a variety of means to move around depending on the circumstancesand 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 stairsand therefore walks in most settingsand often finds it difficult to walk on uneven surfaces, slopes or in crowdsand 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 their own without using walking aids, and can go up or down stairs without needing to hold the handrailand 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 limited © Doreen Bartlett and Jan Willem Gorter, 2011 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 positionsand have difficulty achieving any voluntary control of movementand need a specially adapted chair to sit comfortably and be transported anywhereand 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 supportand therefore always rely on wheelchair when outdoorsand can achieve self-mobility using a powered wheelchairand 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 supportand use a variety of means to move around depending on the circumstancesand 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 stairsand therefore walk in most settingsand often find it difficult to walk on uneven surfaces, slopes or in crowdsand 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 handrailand 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 © Doreen Bartlett and Jan Willem Gorter, 2011 Gross Motor Function Classification System (GMFCS) - Adults Gross Motor Function Classification System (GMFCS) * I II III IV V Unknown 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 * Clinical Discipline Developmental Pediatrics Neurology Neurosurgery Occupational Therapy Orthopedic Surgery Physical Medicine & Rehabilitation Physical Therapy Social Work OtherOther Hospital Affiliation University Affiliation Do you treat adults, children or both? Adults Children Both What are your research interests? 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) Captcha If you are human, leave this field blank. Submit
