News for Aug. 08, 2009 (V 1.1.14)

Two new links to published articles about ECD were added to the “Technical Papers | Published Papers” page.  They are:

Furlanetto TW, Fischer J, Polanczyk CA, Vasconcelos MV.
A Multiplication Problem
Am J Med. 2009 Jan;122(1):32-4

Surabhi VR, Menias C, Prasad SR, Patel AH, Nagar A, Dalrymple NC
Neoplastic and non-neoplastic proliferative disorders of the perirenal space: cross-sectional imaging findings.
Radiographics. 2008 Jul-Aug;28(4):1005-17

An update was made to the “Technical Papers | Published Papers” page to show that there are now 315 published papers on Erdheim-Chester Disease listed in the PubMed database.  A correction was made on the “Technical Papers | Published Papers” page to remove a double entry.

A neurologist from India was added to the Physicians page.  An internal medicine doctor from Spain was added to the Physicians page.  A nuclear medicine/radiologist from Switzerland was added to the Physicians page.  A pulmonologist and critical care physician from Singapore was added to the Physicians page.

The “ECD Studies” page was clarified to show the studies are still ongoing.  A statement was added to explain the listed dates are the dates the studies were formalized.

An update was made to the “Patient-to-Patient | Case Locations” page.  Some people registered with the ECD Global Alliance have moved and another was found to be incorrectly diagnosed.  These changes are now reflected in the information presented.

An update was made to the “Symptoms to Discuss with Your Doctor” page that can be found by selecting “Resources” on the main menu.

The wording on the “Technical Papers” page was modified slightly.  The conversations that have been held between the ECD Global Alliance and a couple of the doctors were previously given the title of “Emerging Information”.  The documentation related to these conversations have now been given the title of “Discussion”.  This eliminates the need to decide when this information is no longer ‘emerging’.

An update was made to the “ECD Global Alliance” page to show the organization now represents 51 ECD cases from around the world.

New chat summaries were added to the Chat Room page.

New entries were made to the “Abstracts of Published Papers” as listed under the “Technical Papers” selection for:

1. A paper published on 2009 Jun 30 in the journal, Circulation.  The article is entitled, “Images in cardiovascular medicine. Cardiac involvement in Erdheim-Chester disease: magnetic resonance and computed tomographic scan imaging in a monocentric series of 37 patients.” and is without an abstract.
2. A paper published on 2009 Jul 4 in the journal, Rheumatol Int.  The article is entitled, “Erdheim-Chester disease: a pitfall in DXA measurements.” and is without an abstract.
3. A paper published on 2009 Jul 9 in the journal, Rheumatol Int.  The article is entitled, “Erdheim-Chester disease: a case report with pulmonary, kidney involvement and bone lesions.” and includes an abstract.

A few grammatical errors were corrected on the “Disclaimer” page, the “What is ECD?” page, and the “Home” page.

A programming change was made to identify the person, F. Gary Brewer, on the website banner.  Much of the work of the organization is done in honor of his memory.

An additional entry was made to the registration form to include the name of the patient when a loved one is registering.  The addition of this entry allows the organization to report more accurately the number of ECD cases represented by the group.