RESOURCES AND WEBSITES

The following links are provided solely as a resource for informational purposes only and are not intended to provide any medical advice, opinions or conclusions. 

Newly Diagnosed

https://rarediseases.info.nih.gov/diseases/6130/cold-agglutinin-disease  https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-treatment-adults-rare-type-anemia 

Rituximab http://www.rituxan.com
MabThera (Rituxan, rituximab) http://www.mabthera.com   
 

Bendamustine and Rituximab - Bendamustine plus rituximab for chronic cold agglutinin disease: results of a Nordic prospective multicenter trial 

 Sigbjørn  Berentsen et al  Google Search

https://ashpublications.org/blood/article/130/4/537/37109/Bendamustine-plus-rituximab-for-chronic-cold

Fludarabine http://www.drugs.com/mtm/fludarabine.html  

Fludaribine and Rituximab
High response rate and durable remissions following fludarabine and  rituximab combination therapy for chronic cold agglutinin disease.
Sigbjørn  Berentsen et al Google Search
https://ashpublications.org/blood/article/116/17/3180/27935/High-response-rate-and-durable-remissions 

Warm Heart Surgery for those with Cold Agglutinin Disease

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#

Global Genes – Rare Disease Foundation Alliance: www.globalgenes.org

NORD – National Organization for Rare Disorders in US: www.rarediseases.org

CORD - Canadian Organization Rare Disorders: info@raredisorders.ca

The Leukemia & Lymphoma Society: www.LLSociety.org

Bing Center for Waldenström’s Research/ Dana Farber/Harvard Cancer Center has some relevant information for Cold Agglutinin Disease: www.waldenstroms.com

Waldenström’s Macroglobulinemia – Research, Treatment, Support: www.stevenptreon.com/links.htm

CAD Co-occurring With Antiphospholipid Syndrome - Autoimmune hemolytic anemia (AIHA) is a greatly heterogeneous disease, with the clinical picture ranging from “mild/compensated to life-threatening anemia, depending on the antibody’s thermal amplitude, isotype and ability to fix complement, as well as on bone marrow compensation,” Barcellini and Fattizzo wrote. One of the rare manifestations of AIHA is cold agglutinin disease (CAD).  Click here for article.

Idelalisib and Obinutuzumab Combinatons shows promise.  Click here for article.

American Autoimmune Related Diseases: aarda.org

Search for “Cold Agglutinin Disease” or Autoimmune Hemolytic Anemia

PubMed www.pubmed.gov service of the U.S. National Library of Medicine and the National Institutes of Health

Merck Manual Home edition:  https://www.merckmanuals.com/home

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

Blood Journal:  www.bloodjournal.org American Society of Hematology Publication

Clinical trials database https://clinicaltrials.gov/

Autoimmunity Research Foundation:  https://autoimmunityresearch.org/ 

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

American Society of Hematology: www.hematology.org

Raynaud’s Phenomenon: search www.medicineNet.com 

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

WebMD: https://www.webmd.com/

Clinical Advances in Hematology and Oncology  https://www.hematologyandoncology.net/  

2022 Exacerbation Secondary Cold Agglutinin Syndrome in the Setting of SARS-CoV-2
https://www.cureus.com/articles/76113-exacerbation-of-secondary-cold-agglutinin-syndrome-in-the-setting-of-sars-cov-2

2020 - Uncover the facts about cold agglutinin disease https://www.cadunraveled.com/
 

2019 - Cold agglutinin disease: current challenges and future prospects S. Berentsen, Alexander Röth, Ulla Randen, Bernd Jilma, Geir E TjØnnfjord

https://www.ncbi.nlm.nih.gov/pubmed/31114413
 

2019 - Cold agglutinins: fending off the attack| Blood | American Society of Hematology Blood (2019) 133 (9): 885-886
https://ashpublications.org/blood/article/133/9/885/260634/Cold-agglutinins-fending-off-the-attack  Sigbjørn  Berentsen
 

2019 - Inhibition of complement C1s improves severe hemolytic anemia in cold
agglutinin disease: a first-in-human trial Blood (2019)133 (9):893-901. https://ashpublications.org/blood/article/133/9/893/260641/Inhibition-of-complement-C1s-improves-severe  Ulrich Jäger, Shirley D’Sa et al

2019 - Novel insights into the treat of complement-mediated hemolytic anemia
https://www.ncbi.nlm.nih.gov/pubmed/31523413 Berentsen S, Hill A, Hill QA, Tvedt THA, Michael M

2018 - How I manage patients with cold agglutinin disease Br J Haematology/ Volume 181, Issue 3  Berentsen S https://onlinelibrary.wiley.com/doi/full/10.1111/bjh.15109

 2018 – Autoimmune hemolytic anemia American Society of Hematology Edu Program Anita Hill and Quentin A. Hill  https://ashpublications.org/hematology/article/2018/1/382/277583/Autoimmune-hemolytic-anemia

2018 - Cold Agglutinin Disease: Medscape http://emedicine.com/ped/topic429.htm Salman Abdullah Ajubran, MD et al

2016 - ANX005, an Inhibitory Antibody Against C1q, Blocks Complement Activation triggered by Cold Agglutinins in Human Disease  Morie A Gertz Blood (2016) 128 (22):1265
https://ashpublications.org/blood/article/128/22/1265/96079/ANX005-an-Inhibitory-Antibody-Against-C1q-Blocks  

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 -TNT003, an inhibitor of the serine protease C1s, prevents complement activation induced by cold agglutinins
http://bloodjournal.hematologylibrary.org/content/bloodjornal/123/26/4015.full.pdf

*Early study of Sutimlimab acknowledging the 40 CADdy Chatter Patients who donated the blood plasma samples used for this study.
 

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/

2014 - Picture of Blood Human Anatomy by Matthew Hoffman, MD
http://www.webmd.com/heart/anatomy-picture-of-blood

Celebrate International Rare Disease Day – Annually February 28th or 29th
http://rarediseases.info.nih.gov/RareDiseaseDay.aspx

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.  It is 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.