Featured Research

from universities, journals, and other organizations

Registry for fatal lung disease aims to speed improvements in care

Date:
June 4, 2014
Source:
Duke Medicine
Summary:
A patient registry to help researchers and clinicians identify, manage and study people who have a progressive lung disease called idiopathic pulmonary fibrosis has been launched. The registry is the first multi-center registry in the United States focused specifically on idiopathic pulmonary fibrosis.

Duke Clinical Research Institute (DCRI) has launched a patient registry to help researchers and clinicians identify, manage and study people who have a progressive lung disease called idiopathic pulmonary fibrosis.

The registry, a joint effort by DCRI and Boehringer Ingelheim Pharmaceuticals, Inc., is the first multi-center registry in the United States focused specifically on idiopathic pulmonary fibrosis. It will include 300 adults recently diagnosed with the disease at 14 participating care sites throughout the country.

"Most of our knowledge about idiopathic pulmonary fibrosis comes from single-center studies and clinical trials, so there has been a tremendous need for a multi-center registry to help doctors, patients and advocates understand how this disease develops and progresses," said Scott Palmer, M.D., MHS, director of pulmonary research at DCRI.

Idiopathic pulmonary fibrosis affects as many as 132,000 people in the United States. It is a progressive, fatal disease characterized by scarring deep in the lung tissue that leads to respiratory or heart failure, pneumonia, and pulmonary embolism. The causes are unknown, although there may be genetic roots; there are no cures and no treatments approved by the Food and Drug Administration.

Palmer said the multi-site registry will help doctors who treat patients with idiopathic pulmonary fibrosis better understand how to diagnose and manage the disease, while it will also help researchers uncover the basic causes and mechanisms of the disease.

"Many factors, including limited understanding of IPF, have resulted in a poor outlook for most patients, with many patients living only three to five years after diagnosis," said Craig Conoscenti, M.D., Director and Idiopathic Pulmonary Fibrosis Program Lead, Clinical Development and Medical Affairs at Boehringer Ingelheim Pharmaceuticals, Inc.

"We are excited to be partnering with Duke Clinical Research Institute to bring important insights and new knowledge that we believe will provide a better understanding of how IPF both presents and progresses," Conoscenti said.

The registry will recruit patients over a two-year period from the 14 pulmonary care sites, providing a diverse geographic area and drawing upon leading scientific experts in the field. Patients will be followed for three to five years to provide time to better understand the factors associated with disease progression and natural history.

In addition, researchers will create a bio-repository that will include blood samples, including patient genetic material, to better understand the biomarkers or genetic factors impact on patient outcomes.


Story Source:

The above story is based on materials provided by Duke Medicine. Note: Materials may be edited for content and length.


Cite This Page:

Duke Medicine. "Registry for fatal lung disease aims to speed improvements in care." ScienceDaily. ScienceDaily, 4 June 2014. <www.sciencedaily.com/releases/2014/06/140604105313.htm>.
Duke Medicine. (2014, June 4). Registry for fatal lung disease aims to speed improvements in care. ScienceDaily. Retrieved September 17, 2014 from www.sciencedaily.com/releases/2014/06/140604105313.htm
Duke Medicine. "Registry for fatal lung disease aims to speed improvements in care." ScienceDaily. www.sciencedaily.com/releases/2014/06/140604105313.htm (accessed September 17, 2014).

Share This



More Health & Medicine News

Wednesday, September 17, 2014

Featured Research

from universities, journals, and other organizations


Featured Videos

from AP, Reuters, AFP, and other news services

President To Send 3,000 Military Personnel To Fight Ebola

President To Send 3,000 Military Personnel To Fight Ebola

Newsy (Sep. 16, 2014) President Obama is expected to send 3,000 troops to West Africa as part of the effort to contain Ebola's spread. Video provided by Newsy
Powered by NewsLook.com
Man Floats for 31 Hours in Gulf Waters

Man Floats for 31 Hours in Gulf Waters

AP (Sep. 16, 2014) A Texas man is lucky to be alive after he and three others floated for more than a day in the Gulf of Mexico when their boat sank during a fishing trip. (Sept. 16) Video provided by AP
Powered by NewsLook.com
Ivorians Abandon Monkey Pets in Fear Over Ebola Virus

Ivorians Abandon Monkey Pets in Fear Over Ebola Virus

AFP (Sep. 16, 2014) Since the arrival of Ebola in Ivory Coast, Ivorians have been abandoning their pets, particularly monkeys, in the fear that they may transmit the virus. Duration: 00:47 Video provided by AFP
Powered by NewsLook.com
Study Links Male-Pattern Baldness To Prostate Cancer

Study Links Male-Pattern Baldness To Prostate Cancer

Newsy (Sep. 16, 2014) New findings suggest men with a certain type of baldness at age 45 are 39 percent more likely to develop aggressive prostate cancer. Video provided by Newsy
Powered by NewsLook.com

Search ScienceDaily

Number of stories in archives: 140,361

Find with keyword(s):
Enter a keyword or phrase to search ScienceDaily for related topics and research stories.

Save/Print:
Share:

Breaking News:
from the past week

In Other News

... from NewsDaily.com

Science News

Health News

    Environment News

      Technology News



      Save/Print:
      Share:

      Free Subscriptions


      Get the latest science news with ScienceDaily's free email newsletters, updated daily and weekly. Or view hourly updated newsfeeds in your RSS reader:

      Get Social & Mobile


      Keep up to date with the latest news from ScienceDaily via social networks and mobile apps:

      Have Feedback?


      Tell us what you think of ScienceDaily -- we welcome both positive and negative comments. Have any problems using the site? Questions?
      Mobile: iPhone Android Web
      Follow: Facebook Twitter Google+
      Subscribe: RSS Feeds Email Newsletters
      Latest Headlines Health & Medicine Mind & Brain Space & Time Matter & Energy Computers & Math Plants & Animals Earth & Climate Fossils & Ruins