NIH Tries to Help Patients With 'Mystery Diseases'

Tuesday, 01 Jul 2014 05:28 PM

 

Share:
  Comment  |
   Contact Us  |
  Print  
|  A   A  
  Copy Shortlink
The government is expanding its "mystery disease" program, funding a network at six universities around the country to help diagnose patients with diseases so rare they've been told they're undiagnosable.
 
The National Institutes of Health has evaluated hundreds of these cold-case patients in its campus research hospital as part of a pilot program since 2008. Demand is so great, there's a waiting list.

So on Tuesday, the agency announced the NIH Undiagnosed Diseases Network, a four-year, $43 million initiative to bring more doctor-detectives on board in the quest to at least put a name to more patients' puzzling symptoms, and eventually find treatments.

The centers include: Baylor College of Medicine in Houston, Duke University, Stanford University, University of California, Los Angeles, Vanderbilt University and the Harvard University teaching hospitals Brigham and Women's, Massachusetts General and Boston Children's.

The network "will focus on the rarest of disorders, often those affecting fewer than 50 people in the entire world," said Dr. Eric Green, director of NIH's National Human Genome Research Institute.

It's a field that can be "bleak and frustrating" for patients and doctors alike, said NIH program director Dr. William Gahl.

More than 3,000 patients have applied to the pilot program, which so far has enrolled about 600, NIH said. Gahl put the "solve rate" at about 25 percent. Scientists say newer, more powerful genetic technologies give hope for unraveling the cause of more of these mystery diseases.

Louise Benge of Brodhead, Kentucky, and her siblings suffer debilitating pain in their hands and legs. After she enrolled in the pilot program, researchers discovered they inherited a rare genetic defect that makes calcium build up just in the arteries that feed those limbs, making walking and other movements difficult. Now researchers are testing a medication.

"They have been really good about helping us and trying their best to figure out something for us to be able to get our life back without having all this pain," Benge told reporters Tuesday.

How the network will operate: The NIH will continue evaluating about 130 to 150 patients a year. The universities will gradually add additional ones until, by the summer of 2017, each should be admitting about 50 patients a year.

Participating patients spend a week in the designated center for head-to-toe examinations and testing. NIH said no patient would be turned away from the program because of lack of insurance although each center would decide how to handle coverage.

© Copyright 2014 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

Share:
  Comment  |
   Contact Us  |
  Print  
  Copy Shortlink
Around the Web
Join the Newsmax Community
Please review Community Guidelines before posting a comment.
>> Register to share your comments with the community.
>> Login if you are already a member.
blog comments powered by Disqus
 
Email:
Retype Email:
Country
Zip Code:
Privacy: We never share your email.
 
Hot Topics
Follow Newsmax
Like us
on Facebook
Follow us
on Twitter
Add us
on Google Plus
Around the Web
You May Also Like

One Part of Brain Doesn't Age, Researchers Say

Friday, 22 Aug 2014 16:29 PM

At least one part of an older person's brain can still process information as well as younger people, according to new r . . .

Eyelid Surgery Can Cure Migraines: Study

Friday, 22 Aug 2014 16:23 PM

Cosmetic eyelid surgery involving specific nerves may do more than improve your looks -- the procedure may also provide  . . .

Ebola 'Shadow Zones' Hide Disease: WHO

Friday, 22 Aug 2014 16:16 PM

The scale of the world's worst Ebola outbreak has been concealed by families hiding infected loved ones in their homes a . . .

Most Commented

Newsmax, Moneynews, and Independent. American. are registered trademarks of Newsmax Media, Inc. Newsmax TV, NewsmaxWorld, NewsmaxHealth, are trademarks of Newsmax Media, Inc.

 
NEWSMAX.COM
America's News Page
©  Newsmax Media, Inc.
All Rights Reserved