The Cerebral Palsy Network

Wednesday, April 23, 2014

 credit for this information goes to: My Child @ Cerebral Palsy .Org

Research on Cerebral Palsy




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 individuals 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 . 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

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.

GOVERNMENT ORGANIZATIONS

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.

2 comments:

Smith Elena said...

Hi, I am a mum of a 7 year old boy (light of my life). I thought I accepted and understood his condition, but recently attended an appointment and have never felt so confused and am hoping some one can help. My son has permanent brain damage and effected his lower body severely he can not walk or stand with equipment, his upper body strength isn't to good, his hands and arm are pretty weak but not to bad. My son is extremely stiff and has pretty bad diatonic movement out consultant from birth and the whole developmental team have said there is no treatment to help him improve with day to day life, and have given us just pain relief to help with the new pain that has just began. 2 days ago we were seen by a team in st Thomas hospital and was shocked to learn that the actual care plan that my son was given by his current consultant is the actual cause of his pain, the new team have suggested seeing a orthopaedic surgeon to have tissue removed from his hamstrings, to help with the muscle shortening that he has. So One day I went on line to the Internet to know more clue about the cp Virus i came across a review of a lady saying that she got her cp Virus cured by A great herbal spell caster Called Dr.lewishill which gives a permanent relief to cp symptoms and cures it. Lord know i needed help so i contact him I made an order of his medicine and my son do not experience cp anymore and that was how my son was cured form it. So if you are in the same situation as my son contact him on this email drlewishill247@gmail.com for advise and how to get the medicine. Thanks

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