Cystic Fibrosis Medicine Provides a place to search various databases for cystic fibrosis articles, links to other CF sites, a message forum and a wide variety of information on management of the disease. http://www.cfprescriber.com/
Cfnetwork Creates a platform for scientists involved in fundamental CF research, for the more than 160 genetic diagnostic laboratories, for CF associations of http://www.cfnetwork.be/
Extractions: European Thematic Network for Cystic Fibrosis The European Cystic Fibrosis Thematic Network was a project approved under the th framework program from the European Union. At the moment the CF network is running without financial support of the EU. The network works in close collaboration with Unit 1 of EuroGentest Since 1996, European External Quality Assessment (EQA) schemes have been set up for genetic testing of cystic fibrosis with the support of the EU (Biomed (1996 - 1999 BMH4-CT96-0462), EMQN (1998 - 2001 SMT4-CT98-7515) and the European CF network (2000 - 2004 QLK3-CT99-0241)). Since 2004 the CF EQA schemes are partially supported by companies. Six purified DNA samples harbouring homozygous or heterozygous CFTR mutations are sent annually to approximately 250 laboratories with the request to test for the presence of CFTR mutations, using their routine protocols. Since 1999, the scope of the scheme has been broadened. It includes the entire analytical process, from DNA sample receipt up to the written report with the final interpretation of the data as it is normally being sent to the clinician who requested for the genetic test. To ensure anonymity during the whole procedure, an identification number is assigned to each participant by the scheme organizer.
Cystic Fibrosis Disease Profile Images of all 24 human chromosomes and different genes that have been mapped to them. Free wall poster available from Web site. http://www.ornl.gov/sci/techresources/Human_Genome/posters/chromosome/cf.shtml
Extractions: Genetic Disease Profile: Cystic Fibrosis For more about the gene that causes cystic fibrosis, see the CFTR Gene Profile . The following was taken from NIH Publication No. 95-3650 Cystic Fibrosis Timeline Middle Ages - In medieval folklore, infants with salty skin, a symptom of cystic fibrosis, are considered "bewitched" because they routinely die an early death. - Fanconi refers to the previously nameless condition as "cystic fibrosis with bronchiectasis." - Andersen of Columbia University develops the first comprehensive description of cystic fibrosis symptoms. - Lowe establishes that cystic fibrosis is a recessive genetic disorder. - After observing excessive dehydration of cystic fibrosis patients during a New York City heat wave, di Sant' Agnese of Columbia University formally reports to the American Pediatric Society that CF patients secrete excessive amounts of salt in their sweat. This observation leads to development of the sweat test as a diagnostic standard for cystic fibrosis.
Extractions: Lost Lake Breath of Life Run Download 2005 Application The 2005 application is available NOW WANT TO VOLUNTEER? August 6, 2005 - Lost Lake Trail Clearing The first 25 volunteers will have their Lost Lake Run entry fee waived. Please note on your application you'd like to volunteer. Challenge yourself! Alaska's only cross-country race to benefit Cystic Fibrosis. Breathtaking View of Resurrection Bay 16 Miles of Cross-Country Terrain Peak Elevation Gain of 2,100 Feet Marked Forest Service Trail The 2005 Lost Lake Breath of Life Run Is Sponsored By Active Alaskan Physical Therapy And Generous Donations Provided by Cystic Fibrosis Foundation Two Dog Trucking The Fish House Tru Value Edgewater Hotel Van Gilder Hotel ERA Helicopters Pennzoil Rent A Can Toilet Co., Inc. Exit Glacier Salmon Bake Northern Lights Therapeutic Massage Chinook's Orthopedic Clinic site modified 9/14/05
Elsevier.com - Journal Of Cystic Fibrosis Journal of cystic fibrosis The Official Journal of the European cystic fibrosis Society Editorin-Chief HGM Heijerman See editorial board for all editors http://www.elsevier.com/wps/product/cws_home/622283
Extractions: Home Site map Regional Sites Advanced Product Search ... Journal of Cystic Fibrosis Journal information Product description Editorial board Audience For advertising and sponsorships For Authors Guide for authors Online Submission Subscription information Bibliographic and ordering information Conditions of sale Dispatch dates Journal related information Most downloaded articles Other journals in same subject area About Elsevier Select your view JOURNAL OF CYSTIC FIBROSIS The Journal of Cystic Fibrosis is the official journal of the European Cystic Fibrosis Society . The journal is devoted to promoting the research and treatment of cystic fibrosis. To this end the journal publishes original scientific articles, editorials, case reports, short communications and other information relevant to cystic fibrosis. The journal also publishes news and articles concerning the activities and policies of the ECFS as well as those of other societies related the ECFS.
Extractions: THOSE WHO POST AND/OR READ POSTS TO THE CONNCOLL CYSTIC FIBROSIS SUPPORT LIST AND WEB PAGE AGREE TO SAVE HARMLESS CONNECTICUT COLLEGE FROM CIVIL AND OTHER LEGAL LIABILITIES THAT COULD ARISE FROM POSTS SENT TO THE LIST AND WEB PAGE. INFORMATION SENT TO THE LIST AND WEB PAGE SHOULD NOT BE CONSTRUED AS MEDICAL ADVICE. PARTICIPANTS SHOULD GET MEDICAL INFORMATION ONLY FROM MEDICAL PROFESSIONALS
Blazing A Genetic Trail Research on mutant genes and hereditary diseases. Includes family studies, the Human Genome Project, how to conquer hereditary diseases like cystic fibrosis, key to basic genetics and a glossary. http://www.hhmi.org/genetictrail/
Cystic Fibrosis Resource Centre A source of information for cystic fibrosis patients, parents, doctors and other carers. http://www.cysticfibrosis.co.uk
Informationdocuments cystic fibrosis European Network. A manual for cystic fibrosis patients and their families. A manual for the CF patients and their families has been http://www.cfnetwork.be/Informationdocuments.htm
Extractions: Information documents A manual for Cystic Fibrosis patients and their families A manual for the CF patients and their families has been designed to provide cystic fibrosis-patients and their families a better understanding of the disease. This leaflet is part of a European initiative undertaken by the European Concerted Action for Cystic Fibrosis. The text is based on the manual of the World Health Organisation (WHO) and the International Cystic Fibrosis (Mucoviscidosis) Association (ICF(M)A). The manual includes the following topics: These leaflets are presently available in sixteen languages: English French German Spanish ... Polish and Macedonian version We would like to thank the translators (translation bureau of AstraZeneca Diagnostics, Milan Macek Jr., Katarina Stepankova, Adriana Zigova, Antonija Redovnikovic, Branko Simat, Jadranka Sertic, Zita Krumina, Dragica Radojkovic, Tatyana K. Kascheeva, Ludmila A. Livshits, Natalia V. Gryschenko, Krisztina Nemeth, Gyorgy Fekete, V. Kucinskas, A. Utkus, J. Kasnauskiene, K. Konciute, Michal Witt, Lucyna Majka, Svetlana Koceva) for all their efforts and cooperation, Orchid, Innogenetics and Nanogen for printing these manuals!
Department Of Medicine Featured is information on laboratory testing, genetic susceptibility to cancer, cystic fibrosis, and sickle cell, thalassemia and other hemoglobinopathies. In addition there are links to counseling services, the graduate program, the Sickle Cell Clinic, newsletters, and list of staff. http://www.urmc.rochester.edu/Genetics/
Scenario #3 - Mr. And Mrs. C The cystic fibrosis gene is recessive, so a child must inherit a copy from In this case, both Mr. and Mrs. C are carriers for the cystic fibrosis gene. http://www.exploratorium.edu/genepool/scenario_3.html
Extractions: Scenario #3 - Mr. and Mrs. C These scenarios are based on actual case studies or current events., provided by UC Berkeley Program in Genetic Counseling and Georgetown University Medical Center. Feel free to post your comments and compare your viewpoint with other on-line visitors. All (reasonable) comments below are posted to the ETHEX listserv Mr. and Mrs. C come to a genetics clinic for prenatal diagnosis. They have each been tested to determine whether they carry the gene for cystic fibrosis, a hereditary lung disease that causes severe breathing problems. The cystic fibrosis gene is recessive, so a child must inherit a copy from each parent to get the disease. In this case, both Mr. and Mrs. C are carriers for the cystic fibrosis gene. The specific mutations for each parent were identified in earlier tests. Mrs. C, who is pregnant, undergoes prenatal diagnosis to determine if the fetus is affected. DNA analysis indicates that the fetus does have two copies of the cystic fibrosis gene, but one of the mutations it carries is different from that of either Mr. or Mrs. C. That makes it virtually certain that Mr. C is not the baby's father. Should the genetics counselor tell both Mr. and Mrs. C about the test results?
CysticFibrosis.com Internet community for cystic fibrosis patients, families and loved ones. Information on clinical trials, gene therapy, testing, associations, research and events. http://cysticfibrosis.com/
Cystic Fibrosis cystic fibrosis is a disease which affects the body s exocrine glands, including the Figure 1. Probability of Having a Child With cystic fibrosis http://www.aarc.org/patient_education/tips/cystfibr.html
Extractions: Cystic Fibrosis is a disease which affects the body's exocrine glands, including the pancreas, sweat glands, and the lungs. It is a hereditary disease most common in white children, occuring in about one in every 2000 births. It is less common among African-American children. (about one in 17,000 births), and even more rare among Orientals (one in 100,000 births ) The mode of inheritance is autosomal which means that it does not involve the x or y chromosomes, which determine sex. It is also recessive, which means that the disease is inherited from both parents. About five percent caucasian Americans are believed to carry the gene. The number of CF carriers is likely to increase in the future. Formerly CF patients rarely lived to adulthood, but improvements in treatment allow many to survive into their thirties or forties and have children of their own. The disease varies considerably in severity. Some cases are vary mild, and may not be diagnosed until adulthood. The probabilities of producing offspring who either have the disease or are carriers of the genetic defect are listed in figure 1. Figure 1. Probability of Having a Child With Cystic Fibrosis
Eddie Andelman's Hot Dog Safari Details on annual cystic fibrosis research fundraising event at Suffolks Downs. http://www.hotdogsafari.org/
Extractions: Corresponding preparer: Scott D. Grosse, Ph.D., Senior Health Economist, Office of the Director, CDC/NCBDDD, 1600 Clifton Rd., NE, MS E-87, Atlanta, GA 30333; Telephone: 404-498-3074; Fax: 404-498-3070; E-mail: sgrosse@cdc.gov Summary Introduction After sickle cell disease (SCD), cystic fibrosis (CF) is the second most common life-shortening, childhood-onset inherited disorder in the United States. Each year, approximately 1,000 persons in the United States receive a diagnosis of CF. Whether screening newborn infants for CF should be recommended on the basis of clinical benefit from early detection has long been the subject of debate and scientific investigation ( ). In 1979, development of a test to measure immunoreactive trypsinogen (IRT) in dried blood spots, which is usually substantially elevated in newborns with CF, made universal newborn screening for CF feasible (
Wescor Inc. Manufactures osmometers, slide stainers, cytocentrifuges, dairy mastitis detection systems, and cystic fibrosis diagnosis equipment. http://www.wescor.com/
Extractions: The hallmark of this disease is elevation of sweat sodium chloride levels. Abnormal secretions within the lungs results in mucus plugging and bronchiectasis. Chest infections, productive cough, dyspnea, wheezing, and hemoptysis are common. There is usually a relentless downhill course. In the later stages of the disease patients with CF develop respiratory insufficiency and cor pulmonale. The airways are usually colonized with Pseudomonas aeruginosa and there are frequent infections with this organism and Staphyloccocus aureus. Etiology/Pathophysiology: This is a hereditary disease with an autosomal recessive transmission. It occurs in 1 in 2000 births. In patients with CF there is increased obstruction of the pulmonary pathways by thickened mucus. This leads to bronchiolitis, increased mucopurulent material, bronchitis, atelectasis, bronchiectasis and diffuse obstruction with overinflated lungs. Pathology: Miscellaneous: Imaging:
Cystic Fibrosis Victoria Current information on cystic fibrosis, cystic fibrosis Victoria the organisation, online chat room, message board, '65 Roses Magazine', SSL Secure Online Shop and donations, events http://www.cysticfibrosisvic.org.au/
Extractions: var monthList = new Array('January', 'February', 'March', 'April', 'May', 'June', 'July', 'August', 'September', 'October', 'November', 'December'); Latest information on Cystic Fibrosis, Services offered by Cystic Fibrosis Victoria, CF chat room and forum, free 65 Roses Magazine, CF shop, fundraising events.
