Government, non-government organizations (NGOs), community-based organizations (CBOs) and industry organizations (disability and cerebral palsy) perform and sponsor research on cerebral palsy, disabilities and impairments which can greatly benefit those with cerebral palsy. Studies help to understand the condition and the cause, form a basis for improved treatment options, and are used to develop prevention measures. Some research allows government agencies to calculate how many individuals have the condition and predict the type and amount of assistance required.
Research is also performed on treatment and therapy options. For instance, stem cell research is being performed to ascertain whether damaged brain cells can be fixed or replaced. In an experiment conducted by neurologist Evan Snyder at Harvard Medical School, mice were injected with stem cell implants. The results of the study indicated that missing cells were spontaneously replaced.
While it is too early to know for certain if Snyder’s results can be replicated in children with cerebral palsy, scientists are hopeful. If they can find a surefire way to manipulate damaged brain cells to heal or replenish themselves, then conditions like cerebral palsy could be treated, or perhaps reversed.
To learn more about stem cell research, in particular, call the MyChild™ Call Center at 1-800-692-4453. The MyChild™ call center has material on the following stem cell topics:
- Basic information about the promise of stem cell research
- Ethical issues surrounding stem cell research
- Stem cell research programs and clinical trials at universities and institutions
- International stem cell research progress
- White House guidelines on stem cell research
- Understanding cord blood options
- Understanding blood and marrow transplantation
- Medical position statements on cord blood usage
- Medical position statements on stem cell treatment
- Types of stem cells (adult stem cells, tissue-specific, fetal, cord blood, embryonic and induced pluripotent stem cells)
- International progress in promoting stem cell research and the advancement of biomedical science
To learn more about various other research studies and clinical trials that can improve the lives of those with Cerebral Palsy, MyChild™ has compiled the following list of international and national research entities currently conducting studies to benefit those with cerebral palsy. MyChild™ realizes the following list is not all-encompassing, nor fully comprehensive, but it is a start. We hope to add more resources in the near future.
International agencies based outside of the United States promoting cerebral palsy research, include:
United Nations (UN) is an international organization of over 192 member states, organized for the purpose of furthering worldwide economic development, human rights, international law, international security, social progress, and world peace. WHO is a branch of the UN charged with directing and coordinating health initiatives within the UN. United Nations Enable is the UN website for all UN activities which further the rights and dignity of those with disabilities.
World Health Organization (WHO) is the United Nations’ coordinating authority for health and leadership on global health initiatives. They shape research agendas, set norms and standards, and articulate evidence-based policy options while monitoring and assessing health trends.
Surveillance of Cerebral Palsy in Europe (SCPE) is a collaborative network in 14 centers in 8 countries across Europe developing a central database of children with cerebral palsy. SCPE monitors trends, disseminates information, and provides a collaborative framework.
The U.S. Department of Health and Human Resources (HHR)
The U.S. Department of Health and Human Resources (HHR) is the leading national agency dedicated to protecting the health of all Americans, while providing essential human services. HHR maintains several divisions that focus on research, prevention, safety, health, and welfare including:
Centers for Disease Control and Prevention (CDC)
The Centers for Disease Control and Prevention (CDC) is a division of the US Department of Health and Human Services, an organization dedicated to marketing communications for the protection of health and disease control, injury and disability. The CDC has conducted surveillance of birth defects, including the following three initiatives:
Metropolitan Atlanta Development Disabilities Surveillance Program (MADDSP) monitors five developmental disabilities, including cerebral palsy, in Atlanta. It is the model for many other programs in US.
Autism and Developmental Disabilities Monitoring Network (ADDM) tracks children with autism spectrum disorders and cerebral palsy.
Centers of Excellence for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) also study autism and cerebral palsy in children.
Other Important HHR Research Divisions
National Institute of Neurological Disorders (NINDS) is currently researching traumatic events, genetic defects and treatment protocols in cerebral palsy.
National Institute of Health (NIH), known as one of the world’s largest research centers, NIH has the largest source of funding for medical research worldwide.
Center on Birth Defects and Developmental Disabilities (NCBDDD) part of the US Centers for Disease Control and Prevention. The center focuses on protecting people who are at increased health risk, including those with disabilities.
The Health Resources and Services Administration (HRSA) is a U.S. agency dedicated to improving access to health care services for people who are uninsured, isolated, or medically vulnerable.
Maternal and Child Health Bureau (MCHB) is focused on improving the health of all mothers and children by training providers, conducting public education and outreach, and providing support services for children with special healthcare needs. The MCHB also offers injury prevention, newborn screening and childcare health and safety programs.
Need more information on a convenient way to access government resources in your state?
Request MyChild™ Kit No. 101
State Resource Kit
NON-GOVERNMENT ORGANIZATIONS (NGOs)
Non-government organizations that perform or fund research, as well as advocate for and assist those with cerebral palsy, include:
March of Dimes is the leading non-government agency on pregnancy and baby health. They are currently focused on preventing birth defects, premature birth and infant mortality.
Easter Seals is a non-profit, community-based health agency focused on assisting those with disabilities attain greater independence.
United Cerebral Palsy (UCP) is an international network of independent non-profit chapters that provides information, advocacy and direct care for those with developmental disabilities.
Cerebral Palsy International Research Foundation is a non-profit organization focused on funding research and educational initiatives directly related to the discovery of cause, cure and evidence-based care for those with cerebral palsy and related developmental disabilities.
UNIVERSITY CENTERS FOR EXCELLENCE IN DEVELOPMENTAL DISABILITIES (UCEDDs)
The vision of the University Centers for Excellence in Developmental Disabilities (UCEDDs) is to be a nation in which all Americans, including Americans with disabilities fully participate in their own independence, are fully inclusive within their communities, and are able to be productive within society.
With at least one UCEDD in each state and territory they work with individuals with developmental disabilities, their families, government agencies, and community service providers to build community capacity through training, technical assistance, service, research and information campaigns. UCEDD project areas of importance include:
- Health promotion and prevention
- Self determination
- Family support
- National and community service
Funding for UCEDDs is provided, in part, by:
- The Administration on Developmental Disabilities (ADD)
- The U.S. Department of Education (ED)
- The National Institutes of Health (NIH)
- Health Resources and Services Administration (HRSA)
- Centers for Medicare and Medicaid Services (CMS)
- Centers for Disease Control and Prevention (CDC)
The program was authorized under the Developmental Disabilities Assistance and Bill of Rights Act of 2000, also known as the “DD Act,” Public Law 106-402.
For more information, University Centers for Excellence in Developmental Disabilities (UCEDDs)
LEADERSHIP EDUCATION IN NEURODEVELOPMENTAL AND RELATED DISABILITIES (LEND)
With centers in 32 U.S. states and the District of Columbia, the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) improves health care delivery systems for children with developmental disabilities by providing individuals with diverse professional disciplines with the knowledge and skills to foster integrated services to enhance cultural competency, family-centered care, and interdisciplinary community-based partnerships. Working with every level of government, private providers, and community organizations, they work together to exchange best practices, address national issues of importance, and embrace regional issues of significance for improving the special health care needs of children with disabilities.
LENDS was developed in the 1950s to to identify children with disabiliites as a Title V program priority of the Children’s Bureau, now known as the Maternal and Child Health Bureau (MCHB). MCHB under the leadership of The Health Resources and Service’s Administration (HRSA) is in charge of LEND which is currently being funded under the 2006 Combating Autism Act.
For more information, Leadership Education in Neurodevelopmental and Related Disabilities (LEND)
INTELLECTUAL AND DEVELOPMENTAL DISABILITY RESEARCH CENTER (IDDRC)
As one of the nation’s first sustained initiatives to prevent and treat disabilities through biomedical and behavioral research, the Intellectual and Developmental Disabilities Research Centers (IDDRCs) was established in 1963. In early years they were known as Mental Retardation Developmental Disabilities Research Centers (MRDDRCs). Today 27 centers, funded for differing purposes engage in research to advance the understanding of various circumstances that lead to intellectual disabilities, including the biochemical processes and metabolic issues involved in brain functioning, brain injury or other brain abnormalities.
The focus of IDDRCs is to develop and implement evidence-based practices by evaluating the effectiveness of interventions (biological, biochemical, and behavioral), advancing prenatal diagnosis, improving newborn screening practices, and developing assistive technologies.
The program is currently funded by the Eunice Kennedy Shriver National Institute for Child Health and Human Development (NICHD) and the National Institutes of Health (NIH).
For more information, Intellectual and Developmental Disability Research Center (IDDRC)