Navigation Links
Medical Journal Publishes First Large-Scale Survey Revealing,Experiences of IPF Patients

CPF-Funded Research Manuscript Appears in Peer-Review Journal Respiratory Medicine

SAN JOSE, Calif., March 21, 2007 /PRNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) today announced a summary manuscript from its Basic Research Questionnaire, considered one of the largest databases of information on patients suffering from idiopathic pulmonary fibrosis (IPF) in the United States, was published in Respiratory Medicine. The publication is an internationally-renowned, peer-reviewed journal devoted to the rapid publication of clinically-relevant respiratory medicine research. This manuscript represents the first large-scale survey of patient experiences and perceptions regarding the diagnosis and treatment of IPF published to date.

The paper, entitled "Patient Experiences with Pulmonary Fibrosis," was authored by Harold Collard, M.D. (University of California, San Francisco), Marvin Schwarz, M.D. (University of Colorado Health Sciences Center), Gregory Tino, M.D. (University of Pennsylvania Medical Center), Paul Noble, M.D. (Duke University Medical Center), Mark Shreve (CPF), and Maureen Michaels and Bruce Carlson (Michaels Opinion Research, Inc.).

The manuscript has been published ahead of print and is available on PubNet, or by visiting the CPF Web page at . The manuscript is cited as: Collard HR, et al. Patient experiences with pulmonary fibrosis. Respir Med (2006), doi:10.1016/j.rmed.2006.10.002.

The manuscript focuses on the issues of patient education and resources. A survey of 52 defined-choice and open-ended questions regarding the diagnosis and management of pulmonary fibrosis was delivered. Two-thirds of the total 1,448 respondents reported a clear lack of information and resources on pulmonary fibrosis at the time of diagnosis. Less tha n half of respondents reported they felt well-informed about treatment options, the role of supplemental oxygen, pulmonary rehabilitation and transplantation. These results suggest there remains a substantial need for improved patient education regarding the diagnosis and management of pulmonary fibrosis.

"Representing the viewpoint of the patients we serve, and delivering programs and services to meet their needs, remains central to our mission," said Mark A. Shreve, chief executive officer of the CPF. "This research clearly shows that we can all be doing more to help IPF patients and their families."

Overall, more than 2,000 patients and families have completed the Basic Research Questionnaire. It is managed by Michaels Opinion Research, Inc. ( ), an independent research firm based in New York.

Funding for this program is provided through private gifts from the DuBrul Family Fund and from Helen and Michael Galvin in memory of their family members who have passed away from IPF.

About Idiopathic Pulmonary Fibrosis (IPF)

IPF is a lung disorder characterized by a progressive scarring -- known as fibrosis -- and deterioration of the lungs, which slowly robs its victims of their ability to breathe. Approximately 128,000 Americans suffer from IPF, which is the most prevalent of a classification of lung disorders known as interstitial lung diseases (ILD's). There is currently no known cause or cure for IPF, nor is there an FDA-approved treatment. An estimated 48,000 new cases are diagnosed each year. IPF is difficult to diagnose, and an estimated two- thirds of patients die within five years of diagnosis.

About the Coalition for Pulmonary Fibrosis

The Coalition for Pulmonary Fibrosis (CPF) is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for idiopathic pulmonary fibrosis (IPF ), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat and cure pulmonary fibrosis; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of IPF issues; and works to improve awareness of IPF in the medical community as well as the general public. The CPF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. For more information please visit or call (888) 222-8541.

CONTACT: Teresa R. Geiger, Coalition for Pulmonary Fibrosis,+1-303-521-4080,

Web site:

Terms and conditions of use apply
Copyright © 2007 PR Newswire Association LLC. All rights reserved.
A United Business Media Company


Related medicine technology :

1. Gene Chips to Detect CYP Variations: A New Step Toward Customized Medical Therapy.
2. AVI BioPharma Partner Cook Medical Announces Completion of Patient Enrollment for APPRAISAL Phase II Clinical Trial for Treatment of Cardiovascular Disease
3. New Study Shows That Extending Prophylaxis With Clexane / Lovenox (enoxaparin Sodium Injection) to 5 Weeks is More Effective Than 10 Days for Reducing the Risk of Venous Thromboembolism (VTE) in Acutely ill Medical Patients With Reduced Mobility
4. TransPharma Medical Announces Positive Results of Phase I Clinical Trials for Transdermal Delivery of hPTH (1-34) for Osteoporosis Treatment
5. Positive ZIO-201 Interim Phase II Sarcoma Data Presented at European Society for Medical Oncology
6. European Society for Medical Oncology (ESMO) Presents Data from the Clinical Trial of MediGenes Cancer-Killing Virus in Press Conference
7. The International Myeloma Foundation Says Data Reported at a Global Medical Meeting in Greece Demonstrates Improved Survival for a Wide Range of Myeloma Patients
8. Algeta Demonstrates Targeted Cancer-killing Potential of Novel Alpha Particle Linked Antibodies in Leading Medical Journal Blood
9. World First Medical Treatment Announced by Researchers at Queen Mary University London and University of Leicester
10. Introgen and Clinical Collaborators to Report New Results with Advanced-Stage Cancer Therapies at Upcoming Medical Meetings
11. Limiting Eligibility for Medical Studies Can Omit Women, African-Americans, Stanford Study Finds
Post Your Comments:
(Date:6/24/2016)... Dehaier Medical Systems Ltd. (NASDAQ: DHRM ) ... medical devices and wearable sleep respiratory products in ... with Hongyuan Supply Chain Management Co., Ltd. (hereinafter referred ... to develop Dehaier,s new Internet medical technology business. ... Hongyuan Supply Chain,s sales platform to reach Dehaier,s dealers ...
(Date:6/24/2016)... , June 24, 2016 Research ... World Market for Companion Diagnostic Tests" report to their ... Market for Companion Diagnostics The World Market ... and personalized medicine diagnostics. Market analysis in the report includes ... Test Market (In Vitro Diagnostic Kits) by Region (N. America, ...
(Date:6/24/2016)... 2016   Pulmatrix, Inc ., (NASDAQ: ... drugs, announced today that it was added to the ... its comprehensive set of U.S. and global equity indexes ... important milestone for Pulmatrix," said Chief Executive Officer ... our progress in developing drugs for crucial unmet medical ...
Breaking Medicine Technology:
(Date:6/25/2016)... ... , ... As a lifelong Southern Californian, Dr. Omkar Marathe earned his Bachelors ... Geffen School of Medicine at UCLA. He trained in Internal Medicine at Scripps Green ... hematology/oncology at the UCLA-Olive View-Cedars Sinai program where he had the opportunity to train ...
(Date:6/25/2016)... ... June 25, 2016 , ... Conventional wisdom preaches the ... In terms of the latter, setting the bar too high can result in disappointment, ... just slow progress toward their goal. , Research from reveals ...
(Date:6/24/2016)... ... June 24, 2016 , ... June 19, 2016 is ... associated with chronic pain and the benefits of holistic treatments, Serenity Recovery Center ... suffering with Sickle Cell Disease. , Sickle Cell Disease (SCD) is a disorder of ...
(Date:6/24/2016)... MIAMI, Fla. (PRWEB) , ... June 24, 2016 , ... ... Florida Trend magazine’s 2016 Legal Elite. The attorneys chosen by their peers for this ... of Florida. , Seven Greenberg Traurig Shareholders received special honors as members of this ...
(Date:6/24/2016)... NY (PRWEB) , ... June 24, 2016 , ... Topical BioMedics, Inc, makers of Topricin ... companies that call for a minimum wage raise to $12 an hour by 2020 and ... This will restore the lost value of the minimum wage, assure the wage floor does ...
Breaking Medicine News(10 mins):