The National Hydrocephalus Foundation (NHF) was incorporated in the state of Illinois in 1979 as a voluntary, not-for-profit, 501 C (3), public service organization. The objectives of NHF are: To assemble and disseminate information pertaining to hydrocephalus, its treatments and outcomes To establish and facilitate a communication network among affected families and individuals To help others gain a deeper understanding of those areas affected by hydrocephalus, such as education, insurance, tax and estate planning, employment and family
To increase public awareness and knowledge of hydrocephalus To promote and support research on the causes, treatment and prevention of hydrocephalus
Children's Hemiplegia and Stroke Association, CHASA, the first non-profit organization in North America to offer information and support to families of infants, children, and young adults who have hemiplegia or hemiplegic cerebral palsy.
The National Association of Chronic Disease Directors (NACDD) is a public health association for chronic disease program directors of each state and U.S. territory. Since its founding in 1988, NACDD has been a national leader in the effort to reduce chronic diseases by mobilizing its members to advocate for preventive policies and programs, encourage knowledge sharing and develop model rtnerships for health promotion through state and community-based prevention strategies
The Brain Attack Coalition is a group of professional, voluntary and governmental entities dedicated to reducing the occurrence, disabilities and death associated with stroke. The goal of the Coalition is to strengthen and promote the relationships among its member organizations in order to help stroke patients or those who are at risk for a stroke.
Effect of treatment on the movement disorder will be measured by a myoclonus scale and a dystonia scale as well as by assessment of overall functional status. Response at various dosages will be compared to baseline for all patients.Safety parameters including neurological examination, blood tests and EKG will be monitored throughout the treatment period and during withdrawal of the medication.
This study is part of a series of studies that will explore how the mind and the brain work to cause episodes of uncontrollable shaking in people who have no known underlying brain or medical disorder. The study is conducted at NIH and at the Brown University Rhode Island Hospital.
Completed Zhengzhou University study to investigate whether systemic hypothermia induced up to 10 hrs after birth would improve the neurodevelopmental outcome at 18 months in infants with moderate or severe HIE.
Eunice Kennedy Shriver National Institute of child Health and Human Development (NICHD) Study to evaluate the safety of high-dose Erythropoietin (Epo) in infants who did not get enough oxygen during birth. Erythropoietin is a hormone normally found in the body that may protect brain cells from damage due to lack of oxygen.
The Rare Diseases Clinical Research Network (RDCRN) is made up of 19 distinctive consortia that are working in concert to improve availability of rare disease information, treatment, clinical studies, and general awareness for both patients and the medical community. The RDCRN also aims to provide up-to-date information for patients and to assist in connecting patients with advocacy groups, expert doctors, and clinical research opportunities
As a major international publisher of academic and research journals, Oxford Journals publishes and develops titles in partnership with the world's most prestigious learned societies. Our goal is to bring high quality research to the widest possible audience.
National Institutes of Health NIH Office of Rare Diseases Research. Web site aims to answer questions about rare diseases and the activities of the ORDR for patients, their families, healthcare providers, researchers, educators, students, and anyone with concern for and interest in rare diseases. The site provides information about ORDR-sponsored biomedical research, scientific conferences, and rare and genetic diseases. It also serves as a portal to information on major topics of interest to the rare diseases community.
Center is dedicated to helping people live to the fullest. Much of our work focuses on protecting people who are especially vulnerable to health risks - babies, children, people with blood disorders, and people with disabilities
The Metropolitan Atlanta Developmental Disabilities Study (MADDS) was the first U.S., population-based epidemiologic study of the prevalence of intellectual disabilities, cerebral palsy, hearing loss, vision impairment, and epilepsy in school-aged children. National Center on Birth Defects and Developmental Disabilities (NCBDDD) staff have written scientific papers using information from MADDS. These papers look at such topics as how common autism spectrum disorders are and what causes hearing loss in children. You can see a list of these papers (starting in 1990) by using the keyword search on the NCBDDD publications Web page. Choose "MADDS (Metropolitan Atlanta Developmental Disabilities Study)" in the keyword box on the search page. You can choose whether you want the list to be sorted by author or by date
Journal of the American Physical Therapy Association. Physical Therapy (PTJ) engages and inspires an international readership on topics related to physical therapy. As the leading international journal for research in physical therapy and related fields, PTJ publishes innovative and highly relevant content for both clinicians and scientists and uses a variety of interactive approaches to communicate that content, with the expressed purpose of improving patient care
NCBI PubMed Abstract, Department of Pediatrics, University of Tennessee Study involving piglets to determine whether the generation of superoxide anion occurs primarily during asphyxia or whether reventilation must take place, 2) to investigate the effects of indomethacin pretreatment at a therapeutic dose of 0.2 mg/kg i.v. on superoxide anion generation, and 3) to investigate the effects of oxypurinol, an oxygen free radical scavenger, on superoxide anion production during asphyxia/reventilation
Study of effects of prenatal nicotine exposture by the Instatute of Psychiatry, King's College London. Study design provides a model for the impact of prenatal exposure to nicotine at blood levels comparable with those in medium and heavy smokers. There were marked developmental and behavioural deficits induced in the offspring of nicotine-exposed female rats
The National Birth Defects Prevention Network (NBDPN) is a group of individuals involved in birth defects surveillance, research, and prevention. It was created to establish and maintain a national network of state and population-based programs for birth defects surveillance and research. The Network assesses the impact of birth defects upon children, families, and health care; identifies factors that can be used to develop primary prevention strategies; and assists families and their providers in secondary disabilities prevention.
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