Links to Other Sites and Articles

The following are a select few of many sites displaying information on Cold Agglutinin Disease (or one of its other names). Many of these are written for the medical profession, but much of the material can be understood by a layperson.

Some of the files referenced on this page are “pdf” files which require you to have Adobe Reader installed on your computer to view them.

Important Papers and Articles

2015 – Safety, Tolerability and Activity of TNT009 in Healthy Volunteers and Patients With Complement Mediated Disorders (TNT009-01)
https://clinicaltrials.gov/ct2/show/NCT02502903?term=tnt009&rank=1
2014 – Treatment of autoimmune hemolytic anemias
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4181250/
2014 – Primary cold agglutinin-associated lymphoproliferative disease: a B-cell lymphoma of the bone marrow distinct from lymphoplasmacytic lymphoma
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3943313/
Please Note: Due to its very technical nature, may be helpful to your health care providers.
2014 – TNT003, an inhibitor of the serine protease C1s, prevents complement activation induced by cold agglutinins
http://bloodjournal.hematologylibrary.org/content/bloodjournal/123/26/4015.full.pdf
2013 – Therapy for chronic cold agglutinin disease: perspective for further improvements
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3626464/

 2013 – TNT009, a Classical Complement Pathway Specific Inhibitor, Prevents Complement Dependent Hemolysis Induced By Cold Agglutinin Disease Patient AutoantibodiesAbstract presented December 8, 2013 at ASH (American Society of Hematologist) Annual Conference, New Orleans, Louisiana

Sandip Panicker, Ph.D.1*, Ju Shi, Ph.D.1*, Eileen Rose1*, Sami Hussain1*, Susan Tom1*, William Strober1*, Steven R. Sloan, M.D., Ph.D.2, Graham Parry, Ph.D.1* and Nancy Stagliano, Ph.D.1*

………..Click here to read the TNT009 report

COMPREHENSIVE RITUXIMAB STUDIES FROM NORWAY – 2004, 2006, 2007, 2010, 2011
AND RELATED ARTICLES

–  OUR VERY SPECIAL THANKS TO DR. SIGBJORN BERENTSEN AND COLLEAGUES FOR THIS WORK

2011 – How Doctor Berentsen treats those with CAD

Dr Berentsen has published an article which explains how he treats those with CAD. Unfortunately we are not able to make it available because of copyright restrictions. However your doctor or you can purchase access to read it.

The article is available from     http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2141.2011.08643.x/abstract

If you have any questions regarding this please contact Betty.

2010 – High response rate and durable remissions following fludarabine and rituximab combination therapy for chronic cold agglutinin diseaseAuthored by Sigbjørn Berentsen, Ulla Randen, Anne Marita Vågan, Henrik Hjorth-Hansen, Anders Vik, Jakob Dalgaard, Eva-Marie Jacobsen, Aud S. Thoresen, Klaus Beiske, and Geir E.Tjønnfjord.
(Blood First Edition Paper, prepublished online July 15, 2010; DOI 10.1182/blood-2010-06-288647)Please read the article carefully since there are several potential side effects.  Always discuss it with your medical practitioners.
Click here to view this report (82KB pdf). You can then use File > Save this Page, to download a copy.
2007 – Articles
Primary CAD – an update.pdf  (888KB)…..by Sigbjørn Berentsen, Klaus Beiske, & Geir E, TjonnfjordB Lymphocytes as targets.pdf  (235KB)…..by Sigbjørn Berentsen, Elling Ulvestad, & Geir E, Tjonnfjord
2006 – Primary chronic cold agglutinin disease: a population based clinical study of 86 patientsAuthored by Doctors Sigbjørn Berentsen, Elling Ulvestad, Ruth Langholm, Klaus Beiske, Henrik Hjorth-Hansen, Waleed Ghanima, Jon Hjalmar Sorbo, Geir E. Tjonnfjord
(Haematologica/the hematology journal…official journal of the European Hematology Association)Click here to go to the relevant web page, then click on the link at the top of the web page “Begin Manual Download”.
2004 – Rituximab for primary chronic cold agglutinin disease: a prospective study of 37 courses of therapy in 27 patientsAuthored by Doctors Sigbjørn Berentsen, Elling Ulvestad, Bjørn Tore Gjertsen, Henrik Hjorth-Hansen, Ruth Langholm, Håvar Knutsen, Waleed Ghanima, Fuad Victor Shammas, and Geir E. Tjønnfjord
(Journal of the American Society of Hematology, Apr 2004; 103: 2925 – 2928)http://www.bloodjournal.org/cgi/content/full/103/8/2925

Where to find more information on some Medical Terms and Medications

Rituximab
Rituximab, sold under the trade names Rituxan and MabThera, is a chimeric monoclonal antibody against the protein CD20, which is primarily found on the surface of B cells. It can therefore destroy B cells. Rituximab is used in the treatment of many lymphomas, leukemias, transplant rejection and some autoimmune disorders.

Wikepedia’s page: http://en.wikipedia.org/wiki/Rituximab
Rituxan Site: http://www.rituxan.com
MabThera Site:  http://www.mabthera.com

Fludarabine
Fludarabine is a cancer medication that interferes with the growth and spread of cancer cells in the body.

Read more: http://www.drugs.com/mtm/fludarabine.html
Wikepedia’s page:   http://en.wikipedia.org/wiki/Fludarabine

Warm Heart Surgery for those with Cold Agglutinin Disease
This link describes the measures taken to carry out a heart bypass operation on a 63 year old patient with CAD.

http://www.ispub.com/journal/the-internet-journal-of-thoracic-and-cardiovascular-surgery/volume-3-number-2/warm-heart-surgery-for-the-patient-with-cold-agglutinins.html#

NORD  – National Organization for Rare Disorders, in the USA. Similar organizations exist in some other countries, such as CORD in Canada. They classify a rare disorder as……. There are over 1,000 of them.

www.rarediseases.org

Bing Center for Waldenström’s Research/ Dana Farber/Harvard Cancer Center in Boston Massachusetts has been established in an effort to advance understanding of the cause of Waldenström’s Macroglobulinemia, and to pursue novel therapies. They have relevant information on their site for all those with Cold Agglutinin Disease.

www.wmprogram.org/Links/Default.asp

Waldenström’s Macroglobulinemia – Research, Treatment, Support. Dr. Steve Treon’s personal website where there’s excellent current information regarding Rituxan and other new treatment options, clinical trials, hematology publications, and research.

www.stevenptreon.com/links.htm

For research information, you may search PubMed at  www.pubmed.gov.

PubMed is a service of the U.S. National Library of Medicine and the National Institutes of Health.
PubMed consists of abstracts from medical journals.

At this site, you can enter the key phrase “cold agglutinin disease” in the search engine bar.

Medline Plus:    www.nlm.nih.gov/medlineplus/

Blood Journal:   www.bloodjournal.org
Select Search for Articles, then on the Specify Citation line enter Year = 2004    Volume = 103    First page = 2925 to get an excellent article covering a study done in Norway by Sigborn Berentsen and others

Also try Year = 2002    Volume = 100    First Page = 1922
Also try entering in the Abstract/Title box the word “rituximab” or “cold agglutinin”.

What is Rituximab:   http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Biologicaltherapies/Monoclonalantibodies/Rituximab.aspx

Raynaud’s Phenomenon:  http://www.nih.gov/news/WordonHealth/apr2001/story02.htm

Type Raynauds into Google for many other sites.

Winter Weather FAQs:    http://www.bt.cdc.gov/disasters/winter/faq.asp

Cold Agglutinin Disease:    www.emedicine.com/med/topic408.htm
authored by Dr Rajalaxmi McKenna & Dr Harry L Messmore (who is mentioned in Bea’s Story)

Cold Agglutinin Disease: http://emedicine.com/ped/topic429.htm

How blood works:    http://health.howstuffworks.com/blood2.htm

What’s your blood type:    www.fi.edu/biosci/blood/types.html

From the children in Mrs Kennedy’s Classroom:

Image Collection: Human Anatomy
http://www.webmd.com/heart/anatomy-picture-of-blood

Search Engines: such as www.google.com allow you to get lots of information about Cold Agglutinin Disease

Medic Alert:   www.medicalert.org

American Autoimmune Related Diseases:  www.aarda.org

American Institute for Research and Education:   www.anemiainstitute.org

Autoimmunity Research Foundation:  www.autoimmunityresearch.org/index.html

National Heart Lung and Blood Institute:  www.nhlbi.nih.gov

Always worth checking to see if any studies are being done on CAD:  www.clinicaltrials.gov

American Society of Hematology:   www.hematology.org

Merck Manual Home editionwww.merck.com/mmhe

Rituximab-How it Works and Why Resistance Occurs by Sue Herms  “TORCH” International Waldenstrom’s Macroglobulinemia Foundation Newsletter.   Go to: http://www.iwmf.com/TorchNewsletter/index.htm  then click on Fall 2008.  The article is on Pages 9-11.

New Anti-CD20 Monoclonal Antibodies by Sue Herms   “TORCH” International Waldenstrom’s Macroglobulinemia Foundation Newsletter   Go to: http://www.iwmf.com/TorchNewsletter/index.htm  then click on Winter 2009.  The article is on Pages 2-4

Celebrate International Rare Disease Day – February 28th
Rare Disease Day was established in 2008 to raise awareness about rare diseases, which impact millions of people worldwide.   It also highlights the importance of research to develop diagnostics and treatments to address unmet medical needs.  On February 28, 2011, the 4th International Rare Disease Day will be commemorated in the USA with a day-long program highlighting the various rare disease research activities supported by the National Institutes of Health (NIH) Office of Rare Diseases Research, the  NIH Clinical Center, the NIH Institutes and Centers, the Health Resources and Services Administration (HRSA), the Food & Drug Administration’s Office of Orphan Product Development (OOPD), the National Organization for Rare Disorders (NORD), and the Genetic Alliance. For further information go to: (http://rarediseases.info.nih.gov/RareDiseaseDay.aspx)

In recognition of Rare Disease Day, FDA will launch a new set of web pages.
(http://www.fda.gov/forindustry/developingproductsforrarediseasesconditions/oopdnewsarchive/ucm385498.htm) which will include the personal stories of individuals with rare diseases, giving these patients a greater voice.  Links from the page will provide additional information about the offices and programs within FDA that help address the unmet medical needs of patients with rare diseases.

anihelicopter