miércoles, 5 de noviembre de 2014

Clinical-guidance · For Professionals · Awareness Research Care

Clinical-guidance · For Professionals · Awareness Research Care

PATIENTS ADVANCING RESEARCH

LOS PACIENTES AVANZANDO EN INVESTIGACIÓN
Iniciativas dirigidas por pacientes y acciones para fomentar la investigación de las enfermedades raras
A-T Society produce las primeras directrices para el diagnóstico y la asistencia clínica para la ataxia-telangiectasia en niños


Ataxia-telangiectasia in children: Guidance on diagnosis and clinical care is the first document of its type written specifically for professionals treating children with A-T.
The complexity of A-T means that each child needs to be seen by a wide range of clinicians and therapists, but its rarity means that very few will know much at all about the condition. This guidance aims to ensure that for the first time there is a shared understanding of the symptoms and progress of the condition and a consistent approach to treating it, based on the experience of the world’s longest-established multi-disciplinary A-T clinic in Nottingham
While the document is primarily aimed at clinicians and other health professional who have little first-hand experience of treating A-T,  it will also to be used by those caring for children with A-T, who want to ensure that they are receiving the best possible care.
If you are a professional treating a child with A-T, please feel free to contact us for more copies to share with colleagues. If you are looking after a child with A-T, please we would encourage you make sure that the professionals treating your child locally have seen the document. Again, we are happy to provide more copies.
However, it must be underlined that following the guidance will not of itself ensure a successful outcome to any treatment. As the document itself says, there is much that we do not understand about A-T and the ultimate judgement about treatment must be made by the doctor or therapist treating the child, in consultation with the child and his/ her parents or carers.
Please click on the image of the document to open a pdf version which you can save to your computer or print. If you would like a printed copy, please e-mail us or phone the office on 01582 760733 to request one. 
Clinical guidance document cover

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