Organisers: María Agustí Foundation and Hemiweb.
Researchers: Sant Joan de Déu Hospital and Barcelona Children’s Hospital.
Collaborating organisations: Ramon Molinas Foundation, TUSGSAL and TUS.
Dates of implementation: 01/03/2017 – 31/12/2017 (Phases I and II).
The percentage of the population with child hemiparesis in Spain, an unknown figure that could help improve quality of life for people living with the disorder
The Ramon Molinas Foundation is sponsoring a research programme launched by the María Agustí Foundation and Hemiweb and carried out by Sant Joan de Déu Hospital and Barcelona Children’s Hospital with the aim of estimating, for the first time, the prevalence of child hemiparesis in Spain. The sponsored project, which counts on the support of social economy enterprises specialising in mobility TUSGSAL and TUS, will look at the impact of child hemiparesis over Spain, including social demographic, quality of life and clinics available for people diagnosed with the disorder.
Hemiparesis is a mild form of child cerebral palsy. Cerebral palsy in children, according to the Spanish Paediatric Association, is a series of movement and posture development disorders causing limitations in movement, attributed to non-progressive damage on the developing brain during the foetal stage or during the first four years of life. Hemiparesis is a neurological condition which makes movement difficult in half of the body. When the neurological condition causes total paralysis in one side of the body, it’s known as hemiplegia.
In Spain, there are no reliable figures for the proportion of the population that have child hemiparesis. The few statistics from other countries indicate that it could affect one in every 1000 babies, and in 80% of cases, it is caused by congenital defect, and the remaining 20% is considered to be postnatal. The lack of statistical figures and knowledge about child hemiparesis makes an analysis of the causes and therapeutic possibilities difficult. Researchers believe that an extensive study of the material could improve treatment and quality of life for children who suffer from the disorder. Diagnosis and early treatment in the acute phase allows for rapid action in the form of personalised rehabilitation treatment.
The research, carried out in three successive phases depending on the geographical areas covered (Metropolitan Area of Barcelona, Phase I; Catalonia, Phase II; and Spain, Phase III), will collect and analyse data from the medical records of patients with congenital child hemiparesis visited by Paediatric Neurological Services in both public and private General and Paediatric Hospitals.
The study of the prevalence of child hemiparesis in Spain will be carried out using the medical records of children and adolescents between 0 and 16 years old registered from the year 2000 onwards. The research will be developed by specialists in neuropediatrics, coordinated by the Sant Joan de Déu Hospital and the Barcelona Children’s Hospital, and expects to work with 30 hospitals over Spain to reach 95% of people with child hemiparesis.
The María Agustí Foundation and the Association of Child Hemiparesis, two organisations dedicated to creating a network of familial support
The María Agustí Foundation, created at the end of 2013, and the Association of Child Hemiparesis, created in 2014, share the project Hemiweb, through which the two organisations work to raise awareness of the existence of child hemiparesis. Both organisations aim to create a network of familial support, run a community of people interested in promoting the spread of knowledge about the disease, and improve the quality of life of children with this neurological disorder.
The mission of both the María Agustí Foundation and the Association of Child Hemiparesis is to provide care, assistance, information and training on hemiparesis. The associations are working on establishing links with organisations from other countries and gathering support from professionals, public and private organisations alongside anyone affected by or linked to these disorders in order to improve the prevention, research and the care of this group.
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