Research and Statistics

Research

Cerebral Palsy Research Project—

We are making great progress on our Cerebral Palsy Research project led by Dr. Stephen Dantzig. We are awaiting final approval before we can proceed with our surveys of families and individuals with Cerebral Palsy. The start is near and within sight.

Here is a quick summary of our project:

The present paper presents the rationale and reliability of using emojis as part of a longer-term study examining the perceived impacts of aging on people with cerebral palsy. There is increasing evidence that while the brain lesion that caused cerebral palsy is not progressive, “Its musculoskeletal manifestations are progressive due to the long-term effects of spasticity on the musculoskeletal system. (Katsma, et. al, 2024)” There is clearly a humanitarian need to continue to research the effects of, and potential interventions, for those who are aging with cerebral palsy. There may also be a financial benefit if the level of care is narrowed down to be more effective and streamlined. The efficacy of using emojis to assist people with disabilities communicate how they feel as well as the validity of limiting a Likert-type scale to three choices for those with disabilities is discussed. The long-term study intends to use three emojis paired with three descriptions of how people may experience the effects of aging with cerebral palsy in a series of surveys. The current study presented the three emojis to the general public and sought an association between the pictograms and the choice of effects offered. While the number of useful responses were limited (n=24), the results indicated a high correlation between the chosen emojis and the associated feelings. Eleven responses were excluded because the respondents chose the same emoji for two or all three choices. The results validate the use of the chosen emojis to assist in the administration of surveys designed to assess the impact of aging with cerebral palsy despite the number of invalid responses. Implications for future research is discussed.

DRAFT FLYER ONLY

Cerebral Palsy Research Network

Cerebral Palsy Research Network focuses on optimizing the lifelong health and wellness of people with cerebral palsy and their families through high quality research, education and community programming.

National Institute of Neurological Disorders

The National Institute of Neurological Disorders and Stroke investigates the causes, prevention, diagnosis and treatment of neurological diseases such as cerebral palsy, Parkinson’s disease, multiple sclerosis, autism, and stroke.

Pathways

Pathways serves to provide free tools to maximize all children’s motor, sensory, and communication development. They believe that information should be easy to obtain and understand. This website features stories of success and inspiration regarding children and adults living with Cerebral Palsy.

National Library of Medicine

The National Library of Medicine is the worlds largest biomedical library, NLM maintains and makes available a vast print collection and produces electronic information resources on a wide range of topics.

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American Academy for Cerebral Palsy and Developmental Medicine

The American Academy for Cerebral Palsy and Developmental Medicine and Developmental Medicine is an academy of over 1,100 health professionals dedicated to advancing the health and well-being of all individuals with cerebral palsy and other childhood-onset disabilities.

Clinical Trials

ClinicalTrials.gov is an online database of clinical research studies and information about their results. The purpose of ClinicalTrials.gov is to provide information about clinical research studies to the public, researchers, and health care professionals.

Data and Statistics

CDC Disability and Health Data System

CDC Disability and Health Data System
https://dhds.cdc.gov/SP/

The Disability and Health Data System is an online source of state level data on adults with disabilities.

Disability Compendium

Disability Compendium
https://disabilitycompendium.org/

Disability Statistics Compendium’s mission is to make statistics on disability easier to find and use. It gathers the most recent national statistics on people with disabilities from various federal programs and agencies.

Data Resource Center for Child and Adolescent Health

Data Resource Center for Child and Adolescent Health
https://www.childhealthdata.org/learn-about-the-nsch/archive-prior-year-data-documents-and-resources

Established in 2003, the mission of the Child and Adolescent Health Measurement Initiative Date Resource Center for Child and Adolescent Health is to expedite and support effective use of data from the National Survey od Childrens Health to improve child, youth, family and community health and well-being in the US.

CDC Cerebral Palsy

CDC Cerebral Palsy
https://www.childhealthdata.org/learn-about-the-nsch/archive-prior-year-data-documents-and-resources

The CDC is the nationals leading science-based, data-driven, service organization that protects the publics health.

Cerebral Palsy Foundation

Cerebral Palsy Foundation
https://www.yourcpf.org/

The Cerebral Palsy Foundation is a 501©3 organization that defines and address moments of impact- the times at which interventions and insights, if properly implemented, have the power to change lives.

Child Neurology Foundation

Cerebral Palsy Foundation
https://www.childneurologyfoundation.org/disorder/cerebral-palsy/

The Child Neurology Foundation connects partners from all areas of the child neurology community so those navigating the journey of diagnosis, management, and care have the ongoing support from those dedicated to treatments and cures.