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Great ITP Resources and Research

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12 years 2 months ago - 12 years 2 months ago #21016 by mjocusa
Great ITP Resources and Research was created by mjocusa
With my dad being recently diagnosed with severe primary ITP, we have done a ton of research. This is something I would encourage people to do to the degree they are comfortable and be your own expert and advocate. Much of the information on the new treatments takes time to filter down to the doctors in day to day practice. Just wanted to share some good resources we have found:

General Information
First is Dr. James N. George's website at the University of Oklahoma www.ouhsc.edu/platelets/

UptoDate (subscription required) also has great articles on ITP.

The Blood Journal of course is seminal reading
Request a free patient copy of a Blood Journal pay article here (typically newest articles)

Google's Scholarly Article Search is great for medical journals and lets you filter by date

Google Alerts - set your keywords and get automatically notified when ITP are posted to the web

Nplate and Promacta Journal Reports and Research
-Dr. George's Editorial in the New England Journal of Medicine

-Romiplostim safety and efficacy for immune thrombocytopenia in clinical practice: 2-year results of 72 adults in a romiplostim compassionate-use program, Blood Journal

-Belgium Study 2011 ASH: Romiplostim Induces Rapid Platelet Response in Adult ITP Patients - Cancer Network, [url=Belgium Study 2011 ASH: Romiplostim Induces Rapid Platelet Response in Adult ITP Patients - Cancer Network]Cancer Network[/url]

-ITP Interrupted, Blood Journal

-Diagnosis and Management of Immune Thrombocytopenia in the Era of Thrombopoietin Mimetics, ASH Education Book

-THROMBOPOIESIS-STIMULATING AGENTS Chronic refractory immune (idiopathic) thrombocytopenic purpura in adults, UpToDate (subscription)

-Clinical applications of thrombopoietic growth factors, UpToDate (subscription)

-Total remission of severe immune thrombocytopenia after short term treatment with romiplostim, Hematology Reports

-Romiplostim for the early management of severe immune thrombocytopenia unresponsive to conventional treatment, British Journal of Haematology

Treatment Guidelines
-The American Society of Hematology 2011 evidence-based practice guideline for immune thrombocytopenia, Blood Journal

-International consensus report on the investigation and management of primary immune thrombocytopenia, Blood Journal

-Clinical manifestations and diagnosis of immune (idiopathic) thrombocytopenic purpura in adults, UpToDate (subscription)

-Chronic refractory immune (idiopathic) thrombocytopenic purpura in adults, UpToDate (subscription)

-How I treat idiopathic thrombocytopenic purpura (ITP), Blood Journal

Splenectomy
-Age as the major predictive factor of long-term response to splenectomy in immune thrombocytopenic purpura, British Journal of Hematology Abstract

-Splenectomy for adult patients with idiopathic thrombocytopenic purpura: a systematic review to assess long-term platelet count responses, prediction of response, and surgical complications, Blood Journal

-Long-term outcomes in adults with chronic ITP after splenectomy failure, Blood Journal

Indium 111 Research (Experimental)
-The site of destruction of autologous 111In-labelled platelets and the efficiency of splenectomy in children and adults with idiopathic thrombocytopenic purpura: a study of 578 patients with 268 splenectomies, Pub Med Abstract

Platelet Transfusions
-The myths about platelet transfusions in immune-mediated thrombocytopenias - Thachil - 2010 - British Journal of Haematology, British Journal of Haematology

-Evidence-Based Platelet Transfusion Guidelines, ASH Education Book

-Clinical and laboratory aspects of platelet transfusion therapy, UpToDate (subscription)

-Refractoriness to platelet transfusion therapy, [url=Refractoriness to platelet transfusion therapy ]UpToDate[/url] (subscription)

-Paper: Platelet Transfusions In Patients with Immune Thrombocytopenic Purpura (ITP) – Evaluation of the Current Nationwide Inpatient Hospital Practices, ASH Confrence

Other Subjects
-Drug Induced ITP: Drug-induced thrombocytopenia, UpToDate (Subscription)

-H Pylori: Does Helicobater pylori initiate or perpetuate immune thrombocytopenic purpura?, Blood Journal

-Idiopathic Thrombocytopenic Purpura Presenting with Severe Epistaxis: A Report of 2 Cases, Surgery Journal

-Rituxan Dosing: Lower dose rituximab is active in adults patients with idiopathic thrombocytopenic, Haematologica purpura,
The following user(s) said Thank You: karenr, Christine, JJBDVM10, Rudy

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12 years 2 months ago #21030 by Ann
Replied by Ann on topic Re: Great ITP Resources and Research
Hi there,

If you haven't already done so you might also want to set up a google alert whereby any new article published will be notified to you in an email. It brings in a lot of rubbish along with the good stuff but it keeps us up to date.

You may also not know that articles in Blood that are usually pay per view can be requested free of charge by patients. A very useful service.
bloodjournal.hematologylibrary.org/site/misc/public.xhtml

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 2 months ago #21033 by Sandi
Replied by Sandi on topic Re: Great ITP Resources and Research
We have posted many of those articles over the years, but have not had them all in one place at the same time.

Good work - you've done a lot of research.

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12 years 2 months ago #21040 by eklein
Replied by eklein on topic Re: Great ITP Resources and Research
For Google Alerts, Gort suggested this search: idiopathic purpura

It cut way down on the rubbish.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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12 years 2 months ago #21041 by eklein
Replied by eklein on topic Re: Great ITP Resources and Research
Sandi - could you sticky that first post, it is a great resource!
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
The following user(s) said Thank You: Christine, mjocusa

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12 years 2 months ago #21042 by mjocusa
Replied by mjocusa on topic Re: Great ITP Resources and Research
Thanks for the comments, added those other resources to the first post.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 2 months ago #21054 by Sandi
Replied by Sandi on topic Re: Great ITP Resources and Research
Which first post?

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12 years 2 months ago #21090 by mjocusa
Replied by mjocusa on topic Re: Great ITP Resources and Research
I think she was referring to my first post of this thread with the links.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 2 months ago - 12 years 2 months ago #21092 by Sandi
Replied by Sandi on topic Re: Great ITP Resources and Research
Done.

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4 years 3 weeks ago #68605 by Meredith
Replied by Meredith on topic Great ITP Resources and Research
Thank you
Excellent info on where to find info

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3 years 4 days ago #70911 by Rudy
Replied by Rudy on topic Great ITP Resources and Research
Thank you for these resources! As a now retired clinical laboratory scientist for over 40 years, I have known many people with ITP. Much to my surprise I was recently diagnosed with it! My count was 26K, the repeat about 3 weeks later by hematologist was 50K in citrate and edta. All other tests results are normal. Other than easily bruising I am ok, though a bit wary. Education is key!

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3 years 4 days ago #70912 by mjocusa
Replied by mjocusa on topic Great ITP Resources and Research
Good to hear you are going a bit better. Low platelets are always alarming.
I am glad that 9 years later this post is still helping folks, that is the power of the internet.
My dad had a tough case of ITP 9 years ago and was hospitalized for 7 weeks in a Kaiser hospital in Northern California. Through our own research and advocacy we consulted with Dr. Howard Liebman at USC (a PDSA advisor) and we got him treatment with Nplate and he has been in remission ever since :)

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