Cold Agglutinin Disease Real World EvidENCE (CADENCE) Registry until July 21, 2024
(3 year enrollment and 3 year follow up), from the following study sites, Austria, France, Germany, Italy, Japan, Netherlands, UK and the US.
The CAD Foundation Announces: US Only!
The Assistance Fund, a non-profit, is now offering financial assistance for Enjaymo, a CAD infusion treatment. You can find information on the website below.
The CAD Foundation has no affiliation with The Assistance Fund.
Paris, September 16, 2022. The European Medicines Agency’s (EMA) Committee for Medicinal Products for Human Use (CHMP) has adopted a positive opinion for Enjaymo™ (sutimlimab), recommending that the C1 protein (C1s) inhibitor be approved in the European Union (EU) for treatment of hemolytic anemia in adult patients with cold agglutinin disease (CAD). CAD is a rare, serious, and chronic autoimmune hemolytic anemia.
Introducing ENJAYMO–the first and only approved treatment in Cold Agglutinin Disease (CAD). ENJAYMO is a prescription medicine used to decrease the need for red blood cell transfusion due to the breakdown of red blood cells (hemolysis) in adults with CAD
Here you will find information and essential questions to ask your doctor as well as lab cards, check lists, blood test tracker and symptoms journal that you can print off the New Diagnosed Package PDF. (6 pages in total)
Medical researchers generally agree that people who trust their doctors and work together with them recover more quickly, have a better quality of life and are more satisfied with their treatment.
A nonprofit foundation dedicated to creating healthier lives for the CAD community of patients.
The following list describes treatments that are among the ones most regularly reported about Cold Agglutinin Disease and by the CAD patients who visit our website. This is not intended to be a comprehensive or all-inclusive list, and it may not be appropriate for your individual situation. It is intended simply as a guide for reference and discussion.
ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world. The safety and scientific validity of this study is the responsibility of the study sponsor and investigators.
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.
Bendamustine and Rituximab - Bendamustine plus rituximab for chronic cold agglutinin disease: results of a Nordic prospective multicenter trial
Sigbjørn Berentsen et al Google Search
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
Warm Heart Surgery for those with Cold Agglutinin Disease
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: firstname.lastname@example.org
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
Clinical Advances in Hematology and Oncology https://www.hematologyandoncology.net/
2022 Exacerbation 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
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
2015 - Safety, Tolerability and Activity of TNT009 in Healthy Volunteers and Patients With Complement Mediated Disorders (TNT009-01)
*2014 -TNT003, an inhibitor of the serine protease C1s, prevents complement activation induced by cold agglutinins
*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
2014 - Picture of Blood Human Anatomy by Matthew Hoffman, MD
Celebrate International Rare Disease Day – Annually February 28th or 29th
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.