The NIH Office of Rare Diseases Research-NCATS and the National Human Genome Research Institute are hosting a webinar at 2:30 p.m. ET today to provide information to the patient community about a new NIH initiative to expand the Undiagnosed Diseases Program.  In addition, significant time will be dedicated to discussing the issues listed below.  NIH will use the information from this discussion to help in the selection process of clinical sites for the expanded Undiagnosed Diseases Program.  (This webinar is not designed to solicit new patients for the program or to answer individual diagnostic questions.)

DATE:  Today (October 17, 2012)

TIME:  2:30 p.m. ET

URL:  https://webmeeting.nih.gov/udp-community_input/

CONFERENCE NUMBER:  1-800-201-2375

PARTICIPANT CODE:  471324

To be discussed:

What are the major barriers to obtaining a diagnosis?

Ready access to specialists, including:

  • inability to see a specialist necessary to help obtain an accurate diagnosis
  • number of specialists seen in order to get an accurate diagnosis
  • issues getting specialists to talk to each other (coordinated care)

Travel requirements (restrictions or limitations due to disease), including:

  • number of times patient has traveled out of town or out of state to be seen by a doctor when trying to get an accurate diagnosis
  • whether travel distance has ever prevented seeing a doctor to get an accurate diagnosis
  • farthest distance traveled to be seen by a doctor when trying to get an accurate diagnosis

Ease of access to newer diagnostic tests, including:

  • problems gaining access to newer imaging or genetic sequencing tests necessary to get an accurate diagnosis
  • insurance reimbursement issues for costs related to getting an accurate diagnosis
  • time required to get tests approved by insurance companies/third party payers
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