Update Information for August 23, 2011 (V 2.20)

Information about a new ECD study being done at the NIH was added to the “ECD Studies” page.  The NIH study, “Clinical and Basic Investigations into Erdheim-Chester Disease” is a natural history study designed to better understand the disease, identify its cause, and classify it according to presentation and progression.  Patient treatment plans will not be suggested or modified under this study.  ECD patients are being recruited for one week of testing at the NIH in Bethesda, Maryland.  (The NIH will pay for all testing costs.  Travel costs will paid on a case-by-case basis.)

The “Grants” page was updated to announce that the ECD Global Alliance is now soliciting research grant applications.  Proposals are being accepted until December 31, 2011, for funding of research projects focused on the pathophysiology or treatment of Erdheim-Chester Disease.  One or more grants, up to a total value of $50,000, will be awarded on April 15, 2012.

A table of all known ECD studies was placed on the “ECD Studies” page.  Previously this page showed only those studies underway that were requesting patient involvement.

Information about a fun run/walk, ECD 5K by the Lake, was added to the “How Can I Help” page.  This fundraiser is scheduled for Sunday, September 25th, 2011, at Tuttle Point Beach, Pymatuning State Park, Espyville, PA at 8:00a.m.  All proceeds will benefit the Erdheim-Chester Disease Global Alliance in memory of Christine Stallard-Klink.  To participate, please complete and mail in a registration form.

Information about a patient’s experience with Actemra was added to the “What is ECD?” page.  Information was also provided on this page about Provigil, a medication used by some ECD patients to combat excessive fatigue/sleepiness.

New links were added to the list of previously published articles, accessible without charge on the internet, as found on the “Technical Papers | Published Papers” page.  They are:

1. Dagna L, Girlanda S, Langheim S, Rizzo N, Bozzolo EP, Sabbadini MG, Ferrarini M.
   Erdheim-Chester disease: report on a case and new insights on its immunopathogenesis
   Rheumatology (Oxford). 2010 Jun;49(6):1203-6. Epub 2010 Jan 22.
2. Alharthi MS, Calleja A, Panse P, Appleton C, Jaroszewski DE, Tazelaar HD, Mookadam F.
   Multimodality imaging showing complete cardiovascular involvement by Erdheim–Chester disease
   Eur J Echocardiogr. 2010 Aug;11(7):E25. Epub 2010 Apr 20.

New entries were made to the “Abstracts of Published Papers” as listed under the “Technical Papers” selection for recently published papers. The additions are as follows:

1. An article published in the journal, Vnitr Lek.  The article is entitled, “Successful treatment of Erdheim-Chester disease by 2-chlorodeoxyadenosine-based chemotherapy. Two case studies and a literature review” and includes an abstract.
2. An article published in the journal, J Radiol.  The article is entitled, “Imaging features of osseous and extra-osseous involvement in Erdheim-Chester disease” and includes an abstract.
3. An article published in the journal, Rheumatol Int.  The article is entitled, “Bilateral orbital Erdheim-Chester disease treated with 12 weekly administrations of VNCOP-B chemotherapy: a case report and a review of literature” and includes an abstract.
4. A letter to the editor published in the journal, Eur J Neurol.  The letter is entitled, “Erdheim Chester disease presenting as slowly progressive cerebellar syndrome and asymptomatic widespread skeletal involvement ” and does not include an abstract.
5. An article published in the journal, MMW Fortschr Med.  The article is entitled, “Which organs are involved here? Erdheim-Chester disease” and does not include an abstract.

A new ECD-knowledgeable physicians’ contact information was added to the  “Physicians” page.  It is:

Michael Schultz, MD, PhD

Gastroenterologist and Senior Lecturer

Department of Medicine, University of Otago and Southern DHB

Private Bag 913, Dunedin 9054, NEW ZEALAND

Telephone:  03 474 0999 Internal: 8240

Fax: 03 474 7724

e-mail:  michael.schultz@otago.ac.nz

The Case Locations as found on the “Patient-to-Patient” and “Home” pages, was updated.

Chat summaries were added to the “Chat Room” page.