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On this page you can find information about an informative Clinical Slide Kit, watch some educational videos, learn about our Research Contracts and Reagents Program, read about the Epidemiologic Study of Cystic Fibrosis II, and utilize some handy links.

Clinical Slide Kit

Learn about the symptoms and treatment of mild to moderate cystic fibrosis patients by downloading the presentation below.

Please use this slide kit to further your education; you may not use the slide kit for any other purpose without obtaining the express written consent of Genentech, Inc. Please be advised that the slide kit should not be altered or modified, e.g., cutting and pasting select slides, or distributing to others.

Clinical overview of cystic fibrosis and Pulmozyme in mild to moderate patients.

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Research Contracts and Reagents Program

Genentech is famous for its world class research. In addition to the research done at Genentech, we also support investigators in academic institutions throughout the world by supplying key reagents for their research. The Research Contracts and Reagents Program at Genentech coordinates the interface with outside institutions.

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Epidemiologic Study of Cystic Fibrosis II

ESCF II

The Epidemiologic Study of Cystic Fibrosis (ESCF) was designed to monitor patients receiving routine clinical care for cystic fibrosis. It was a multicenter, prospective, observational study in adult and pediatric patients with cystic fibrosis (CF). Enrollment began in February 1994 and concluded December 31, 2005. During the first phase of data collection, roughly 1994 to 2001, data collection focused on patient information such as clinical characteristics, the use of routine therapies, the results of pulmonary function tests, respiratory cultures, information on growth and nutrition and details of antibiotic treatments. From 2001 to study closure in 2005, information on risk factors, measures of pulmonary function and pulmonary exacerbations requiring specific therapy was also collected. During the latter collection period, the primary intent was to describe existing practice patterns, changes in practice patterns over time, and outcomes over time, such as lung function, growth and nutrition, pulmonary exacerbations, and quality of life.

This encounter-based database covers over 832,000 patient encounters on a total of 32,414 patients. Detailed data is available on lung-function, growth, microbiology, medical conditions, exacerbations and hospitalizations as well as chronic and acute therapies. CFQ(would define) data are available on over 8,000 patients and over 15,000 CFQ.

Information on the safety and effectiveness of long-term Pulmozyme® (dornase alfa) Inhalation Solution treatment of CF patients in clinical practice was collected in the study. Information on patients not treated with Pulmozyme® was also collected.

Access to the database is overseen by the North American Scientific Advisory Group. For those clinicians and researchers wishing to access this database, please forward your contact information to: ESCF-Request-d@gene.com. You will be contacted by the project manager and provided application information.

ESCF Publications:

  • Morgan W, Butler S, et al. (1999). Epidemiologic Study of Cystic Fibrosis: Design and implementation of a prospective, multicenter, observational study of patients with cystic fibrosis in the U.S. and Canada. Pediatr Pulmonol. 28:231-241.
  • Konstan M, Butler S, et al. (1999). Patterns of medical practice in cystic fibrosis: Part 1. Evaluation and monitoring of health status of patients. Pediatr Pulmonol. 28:242-247.
  • Konstan M, Butler S, et al. (1999). Patterns of medical practice in cystic fibrosis: Part II. Use of therapies. Pediatr Pulmonol. 28:248-254.
  • Johnson C, Butler S, et al. (1999). Estimating effectiveness in an observational study: A case study of dornase alfa in cystic fibrosis. J Pediatr. 134:734-739.
  • Geller D, Kaplowitz H, et al. (1999). Allergic bronchopulmonary aspergillosis in cystic fibrosis. Chest. 116:639-646.
  • Shreve M, Butler S, et al. (1999). Impact of microbiology practice on cumulative prevalence of respiratory tract bacteria in patients with cystic fibrosis. J Clin Microbiol. 37:753-757.
  • Johnson C, Butler S, et al. (2003). Factors influencing outcomes in cystic fibrosis. A center-based analysis. Chest. 123:20-27.
  • Konstan M, Butler S, et al. (2003). Growth and nutritional indexes in early life predict pulmonary function in cystic fibrosis. J Pediatr. 142:624-630.
  • Rabin, H, Butler, S, et al. (2004). Pulmonary exacerbations in cystic fibrosis. Pediatr Pulmonol. 37:400-406.
  • Marshall BC, et al. (2005). Epidemiology of cystic fibrosis-related diabetes. J Pediatr. 146(5):681-7.
  • McMullen, A, Pasta, D, et al. Impact of pregnancy on women with cystic fibrosis. Chest, 2006;129;706-711.
  • Padman: “Infant care patterns at epidemiologic study of cystic fibrosis sites that achieve superior childhood lung function” Ped. 2007 Mar; 119 (3): eJ31-7.
  • Ren: “Relationship between Methicillin resistant SA in CF respiratory cultures and clinical status” Ped Pulm. 2007 Jun; 42(6):513-8.
  • Konstan: “Risk Factors for rate of decline in forced expiratory volume in one second in children and adolescents with CF”. J Peds. 2007 Aug: 151(2) :111-113.
  • Wagener: “Registries for Evaluation of Patient Outcomes” AHRQ Handbook.

ESCF Abstracts

1998

  1. Schidlow D, Butler S, et al. Predictors of progression to severe pulmonary status in cystic fibrosis [abstract]. Pediatr Pulmonol. 1998;26(suppl 17):S14.3;149.
  2. Wagener J, Butler S, et al. New cases of Pseudomonas aeruginosa: risk factors and outcomes [abstract]. Pediatr Pulmonol. 1998;26(suppl 17):S14.1;147-148.
  3. Wohl M, Butler S, et al. Measuring outcomes in ESCF: can we do it? [abstract] Pediatr Pulmonol. 1998;26(suppl 17):S14.2;148.

1999

  1. Johnson C, Butler S, et al. Assessment of pulmonary effectiveness over two years [abstract]. Pediatr Pulmonol. 1999;26(suppl 17):S14.4;151-152.
  2. Johnson C, Butler S, et al. Pulmozyme use in CF patients less than 5 years of age: a report from ESCF [abstract]. Pediatr Pulmonol. 1999;28(suppl 19):335.
  3. Konstan M, Butler S, et al. The relationship between nutritional status in early life and pulmonary function in cystic fibrosis [abstract]. Pediatr Pulmonol. 1999;28(suppl 19):155-156.
  4. Marshall B, Butler S, et al. ESCF: analysis of the adult CF population demonstrates a survivor bias [abstract]. Pediatr Pulmonol. 1999;28(suppl 19):337-338.
  5. Wohl M, Butler S, et al. The epidemiologic study of cystic fibrosis (ESCF): a review of the association between geographic region and outcomes in CF [abstract]. Pediatr Pulmonol. 1999;28(suppl 19):341.

2000

  1. Marshall B, Butler S, et al. CF-related diabetes mellitus: the ESCF experience [abstract]. Pediatr Pulmonol. 2000;30(suppl 20):133-134.

2001

  1. Konstan M, Butler S, et al. The epidemiologic study of cystic fibrosis: risk factors for FEV decline in children and adolescents with CF [abstract]. Pediatr Pulmonol. 2001;suppl 22:320.
  2. Wagener J, Butler S, et al. Age related risk for new detection of Pseudomonas aeruginos [abstract]. Pediatr Pulmonol. 2001;suppl 22:287.

2004

  1. Morgan, et al. High lung function in children with CF is associated with less aggressive treatment following an acute decline in FEV1.
  2. Quittner A, et al. Examination of Quality of Life Scores in ESCF II: The impact of age, disease severity, and gender.
  3. Regelmann W, et al. Characteristics of Pulmonary Exacerbation and Current Treatment Practice for CF Patients Less Than 6 Years Old.

2005

  1. Padman, et al. Enrollment characteristics and care patterns in infants with cystic fibrosis are associated with subsequent differences in FEV1 in children at ESCF study sites.
  2. Schechter M, et al Socioeconimic status and the likelihood of antibiotic treatment for Pulmonary Exacerbations.
  3. Schechter M, et al. Association of Socioeconomic status with outpatient monitoring and the use of chronic CF therapies.
  4. Quittner A, et al. The Impact of Race, Ethnicity and Socioeconomic Status on Quality of Life.
  5. Quittner A, et al. Psychometric Evaluation of the CFQ-R in a National CF Database.

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