Standards of Care for Cystic Fibrosis ten years later.

نویسندگان

  • Carlo Castellani
  • Steven Conway
  • Alan R Smyth
  • Martin Stern
  • J Stuart Elborn
چکیده

In 2004 the European Cystic Fibrosis Society (ECFS) convened a Consensus Conference on standards of care for cystic fibrosis (CF). CF professionals from many European countries, and some from outside Europe, produced a document that was later published in the Journal of Cystic Fibrosis [1]. This consensus on standards of care proved to be very useful for CF centres negotiating with the funding agencies in their countries and set the scene for better CF care in Europe. Ten years later CF care worldwide and specifically in Europe has evolved in many ways:

برای دانلود متن کامل این مقاله و بیش از 32 میلیون مقاله دیگر ابتدا ثبت نام کنید

ثبت نام

اگر عضو سایت هستید لطفا وارد حساب کاربری خود شوید

منابع مشابه

Molecular screening of R117H mutation in non caucasian cystic fibrosis patients in the north of Iran

Cystic fibrosis is an autosomal recessive disease caused by a wide spectrum of mutations in the gene encoding for the cystic fibrosis transmembrane conductance regulator protein. These mutations that correlate with different phenotypes, vary in their frequency and distribution in different populations. In this study missense mutation R117H that associated with the different clinical symptoms wa...

متن کامل

Coincidence of Cystic Fibrosis in Mother and her Child Related to Infertility

Cystic fibrosis (CF), the most common life-shortening, hereditary disease in whites, manifests itself principally in childhood. Patients presenting with CF as adults appear to be different when compared to patients diagnosed with CF during childhood. Often these patients have been previously diagnosed with asthma, chronic bronchitis or emphysema. We present a case of a woman diagnosed with CF a...

متن کامل

Investigation of Growth of Microorganisms within the Spacers of Children with Cystic Fibrosis

Background and aim: Cystic fibrosis is a monogenic disorder in several systems. Since spacers used by these patients may be used several times a day, many of them do not know how to wash and use them, so these devices are good places for bacteria to grow. Therefore, this study was performed to identify and determine the relationship between the growth of microorganisms inside spacers and the ef...

متن کامل

European Cystic Fibrosis Society Standards of Care: Best Practice guidelines.

Specialised CF care has led to a dramatic improvement in survival in CF: in the last four decades, well above what was seen in the general population over the same period. With the implementation of newborn screening in many European countries, centres are increasingly caring for a cohort of patients who have minimal lung disease at diagnosis and therefore have the potential to enjoy an excelle...

متن کامل

Ban smoking in public housing.

Ten years ago, I was the doctor for an 18-year-old with cystic fibrosis whose mother was a heavy smoker. The patient told me how she coughed, wheezed, and choked when she was at home. I became close with her; it seemed she was always in the hospital, and I couldn't help but think it was because she wanted to escape a toxic environment. Three years later, at 21, she died—more than 14 years befor...

متن کامل

ذخیره در منابع من


  با ذخیره ی این منبع در منابع من، دسترسی به آن را برای استفاده های بعدی آسان تر کنید

برای دانلود متن کامل این مقاله و بیش از 32 میلیون مقاله دیگر ابتدا ثبت نام کنید

ثبت نام

اگر عضو سایت هستید لطفا وارد حساب کاربری خود شوید

عنوان ژورنال:
  • Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society

دوره 13 Suppl 1  شماره 

صفحات  -

تاریخ انتشار 2014