BACKGROUND: In 1992 France set up a national cystic fibrosis observatory (Observatoire national de la mucoviscidose, ONM) to monitor the state of health of patients on an annual basis. Using the ONM data, this study estimates the main indicators for life expectancy and assesses the total number of cystic fibrosis patients. METHODS: The data for the years 1994 to 2003 are divided into 3-year periods. Life tables are drawn up for these periods, from which mean and median lengths of life are determined. Using the most recent life table, the number of births in 2003 and the incidence of the disease, the total population of patients can be estimated, assuming a stationary population. RESULTS: In 2001-2003, life expectancy at birth of patients registered with the ONM was 39.1 years and median length of life was 36.4 years. These results, substantially better than those of 1994-1996, are linked to improved conditions of patient inclusion in the ONM database, to improvements in their healthcare, but also to the limitations of the life tables. Based on the 2003 data, the total theoretical number of patients is 6490, and coverage by the ONM database is thus 63.2%. CONCLUSIONS: These provisional results demonstrate the need to convert the ONM observatory into a registry providing exhaustive coverage of all patients.
BACKGROUND: In 1992 France set up a national cystic fibrosis observatory (Observatoire national de la mucoviscidose, ONM) to monitor the state of health of patients on an annual basis. Using the ONM data, this study estimates the main indicators for life expectancy and assesses the total number of cystic fibrosispatients. METHODS: The data for the years 1994 to 2003 are divided into 3-year periods. Life tables are drawn up for these periods, from which mean and median lengths of life are determined. Using the most recent life table, the number of births in 2003 and the incidence of the disease, the total population of patients can be estimated, assuming a stationary population. RESULTS: In 2001-2003, life expectancy at birth of patients registered with the ONM was 39.1 years and median length of life was 36.4 years. These results, substantially better than those of 1994-1996, are linked to improved conditions of patient inclusion in the ONM database, to improvements in their healthcare, but also to the limitations of the life tables. Based on the 2003 data, the total theoretical number of patients is 6490, and coverage by the ONM database is thus 63.2%. CONCLUSIONS: These provisional results demonstrate the need to convert the ONM observatory into a registry providing exhaustive coverage of all patients.
Authors: Edith T Zemanick; J Kirk Harris; Steven Conway; Michael W Konstan; Bruce Marshall; Alexandra L Quittner; George Retsch-Bogart; Lisa Saiman; Frank J Accurso Journal: J Cyst Fibros Date: 2009-10-14 Impact factor: 5.482
Authors: Abaigeal D Jackson; Leslie Daly; Andrew L Jackson; Cecily Kelleher; Bruce C Marshall; Hebe B Quinton; Godfrey Fletcher; Mary Harrington; Shijun Zhou; Edward F McKone; Charles Gallagher; Linda Foley; Patricia Fitzpatrick Journal: Thorax Date: 2011-06-08 Impact factor: 9.139
Authors: Shihab Hameed; John R Morton; Adam Jaffé; Penny I Field; Yvonne Belessis; Terence Yoong; Tamarah Katz; Charles F Verge Journal: Diabetes Care Date: 2009-11-12 Impact factor: 19.112
Authors: Parinya Chamnan; Brian S F Shine; Charles S Haworth; Diana Bilton; Amanda I Adler Journal: Diabetes Care Date: 2009-11-16 Impact factor: 19.112
Authors: Aris Angelis; Panos Kanavos; Julio López-Bastida; Renata Linertová; Elena Nicod; Pedro Serrano-Aguilar Journal: BMC Health Serv Res Date: 2015-09-28 Impact factor: 2.655