This e-newsletter is a publication of The Platelet Disorder Support Association. The information in this newsletter is for educational purposes only. For advice on your unique medical condition, please consult a health care professional.
ITP SURVEY: LAST CHANCE
We will close our ITP survey on December 31. If you haven’t taken the survey, please take a few minutes to complete it. Everyone’s input is valuable. The survey is at http://www.pdsa.org/survey/
The next step in the survey process is to add the latest input to our database and analyze the data. We’ve done some preliminary analysis and presented our findings at a small meeting of ITP researchers at the ASH conference. The work was well received and generated much interest. We will share some of the preliminary results, but don’t want to do that until the survey input is closed.
AMERICAN SOCIETY OF HEMATOLOGY MEETING: A BRIEF REPORT
We’re back from the ASH meeting in Orlando. The meeting was jammed with days of targeted education presentations and 5453 abstracts presented in simultaneous meetings and poster sessions. In addition to attending and viewing as many of these as we were able, PDSA hosted a booth (sponsored in part by Nabi and Baxter) where we met attendees interested in our work. During the coming months we will report findings from the meeting in our e-news and the “Platelet News,” the PDSA newsletter (http://www.pdsa.org/joinus.htm ).
Unfortunately, no one reported a new treatment for ITP. However, there was steady progress in understanding more about the disease and the efficacy of the treatments currently used and treatments in clinical trials.
Some interesting notes:
Hepatitis C and thrombocytopenia
Howard Leibman, et al reported that 30% of the ITP patients they evaluated tested positive for hepatitis C. Usually, 2-3% of the population test positive. The ITP patients with positive hepatitis C tests had a different profile of bleeding and other symptoms than the ITP patients with negative hepatitis C tests. The authors recommend that hepatitis C tests be included in the list of diagnostic tests for ITP.
The NIH has approval to award grants totaling $6 million per year for 5 years for a Transfusion Medicine/Hemostatis Clinical Research Network. This will fund a group of up to 16 clinical centers and one data coordinating center devoted to testing promising treatments for ITP and other non-malignant blood disorders. The awards will be made next year. PDSA will help by publicizing the clinical trails that will be initiated by this network of treatment centers. For more information go to: http://grants.nih.gov/grants/guide/rfa-files/RFA-HL-02-001.htm.
Treatment of Newly Diagnosed ITP
John Kelton of McMaster University suggests that the physician treating ITP patients should focus on achieving a safe platelet count rather than a normal platelet count. His experience and at least one published report suggest that many patients have a greater morbidity from the treatments than the disease itself.
Dr. de Wolf reports that 42% of ITP patients he measured had decreased platelet production. Evidence suggests this is due to antibodies toward megakaryocytes, the cells that form platelets. Prednisone can increase platelet production.
Rituxan Treatment for ITP
Rituxan was the treatment that was mentioned most often in the abstracts. The reported results were positive but varied. It was unclear from the data whether Rituxan worked better for those with or without a spleen.
MORE ASH INFORMATION
We will be formatting a downloadable copy of all the ASH abstracts that pertain to ITP and placing them on the web site before the end of this week. They will be at http://www.itppeople.com/abstracts.htm.
NABI will send us copies of the handout booklet from the “Third Annual Review of Immune Thromboctopenic Purpura,” one of the sessions at the ASH meeting. This 30 page booklet of presentation notes and slides will be on sale via our web site at http://www.pdsa.org/publications.htm after the first of the year.
During this holiday season, we’d like to thank you for all the gifts you have given us…the gifts of participation, donations, and kind thoughts. We would like to send everyone a package of platelets in appreciation, but they don’t keep well. Instead, our present to you will be to do the very best we can to help.
We at PDSA wish you and your family a joyous holiday season.
For information on advertising in our e-news letter contact us at email@example.com.
This e-newsletter is published by the Platelet Disorder Support Association, P.O. Box 61533, Potomac, MD, 20859, phone/fax: 1-87-Platelet or (301) 294-5967, web: http://www.pdsa.org/, e-mail: firstname.lastname@example.org