I'm Jamal, and my life as a musician has been a melody entwined with sickle cell disease (SCD). In this journey, I discovered many remarkable facts about alloantibodies. My body creates alloantibodies when I receive blood that is different than mine. Alloantibodies are antibodies that attack the blood I receive for the treatment of my SCD. They can cause severe medical issues if the blood I receive is not properly matched. My providers need to lookup my alloantibody history before they can provide safe blood to me.
Mi nombre es Julia. I remember the day of my pregnancy that I learned about alloantibodies. My partner and I have different blood types. I, like many other women in pregnancy, developed alloantibodies. These alloantibodies led to blood loss in my unborn daughter. Fortunately, we are doing fine now after my daughter received a blood transfusion compatible with my alloantibodies. If I need a blood transfusion in the future, I will need to ensure I too receive compatible blood. This journey taught me the importance of understanding alloantibodies in patient care and the unique nature of every patient's story.
Hey there, I'm David—a liver transplant recipient with a gripping tale to tell. The day I faced surgery, little did I know that a hidden secret in my blood almost cost me my life. When my surgeon requested blood for me, they searched my blood for alloantibodies but did not find any. Only when they reviewed my medical record at another hospital did they realize I had an alloantibody known as an anti-Jka. This discovery allowed my healthcare team to provide me with safe blood. My journey is a testament to the power of attention to detail, of unsung heroes working to share transfusion histories, and the incredible impact they have on patient outcomes.
Nice to meet you. I am Amy. When I started my battle with cancer, I did not know about graft vs. host disease. I had developed leukemia, and after initial chemotherapy, I received my bone marrow transplant. During this time, I required blood transfusions to stay alive. I am so thankful to our blood donors! As I regained my strength, I lived life to the fullest by traveling to family and friends. Fortunately, my medical record traveled with me because when I visited the Emergency Room unexpectedly, they knew to provide me with irradiated blood to prevent graft vs. host disease. My doctor explained they nearly missed this detail, but the Alloantibody Exchange had my transfusion records, avoiding this complication.
A winner of the AABB President's Award and the "Challenge on Equity from U.S. Department of Health and Human Services Secretary's (HHS).
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"Rate of ABO incompatibility decreased 4.6-fold, that of AHTR decreased 2-fold and that of DHTR decreased 2.5-fold pre vs post consultation of OLPTH (OnLine the Past Transfusion History, a Quebec-based transfusion history exchange)."
Pierre Robillard, et al.
"Access to a centralized patient database detected 38 percent more ABO typing errors and prevented six mistransfusions, which would not have been prevented at a single institution. Centralization of patient transfusion data should be encouraged."
Duncan MacIvor, et al.
"The regional alloantibody registry prevented potential delayed hemolytic transfusion reactions"
Vicki Schwickerath, et al.
"Since the implementation of this system there has been a significant drop in the frequency of ABO incompatible transfusions, acute hemolytic transfusion reactions and delayed transfusion reactions; hence, safety of the blood system in Québec has been enhanced."
Julie Ditomasso, et al.
"The database provides evidence that sharing transfusion information, within regulatory requirements, tangibly improves patient care."
Meghan Delaney, et al.
“A centralized database can help prevent issuing incompatible RBC units”
Sarah K. Harm, et al.
"Almost two-thirds of records for patients tested at both hospitals had some form of discrepancy, most commonly the failure of one of the facilities to detect an antibody. Such discrepancies are serious since they constitute risk factors for incompatible transfusions and DHTRs (delayed hemolytic transfusion reactions)."
Nisha Unni, et al.
“A national or regional alloantibody database should be a priority.”
Lance Williams, et al.
"Databases for sharing transfusion information between hospitals for enhanced detection of blood type errors and prevention of adverse events are scarce but have a proven positive effect on the prevention of acute and delayed hemolytic transfusions."
Adriaan J. van Gammeren, et al.
"A national transfusion medicine registry could prevent DHTRs by sharing alloantibody records between blood banks."
Ronald 'George' Hauser, et al.
"When taken together, the included studies have highlighted and investigated flaws in transfusion services provided around the world, many of which have the potential to be significantly reduced through the introduction of a National registry."
Zachary Powell, et al.
"This case is an example of how a registry of RBC antibodies is critical to providing good patient care."
Gagan Mathur, et al.
"We call upon policymakers to consider creating a nationwide database of all SCD patients, regardless of where they have received care. This database should include information on patient blood group genotypes, phenotypes, antibodies, and transfusion histories"
Mischa Covington, et al.
"By reducing DHTR-specific mortality, an alloantibody exchange is predicted to be a life- and cost-saving investment for alloimmunized people living with SCD."
George Goshua, et al.
"By reducing DHTR-specific mortality, a shared transfusion resource in the United States projects to be a life-saving and cost-effective intervention for patients with SCD in the United States."
Ito Satoko, et al.
By completing the form next to the map, it shows you support the Alloantibody Exchange. We can connect you with more supporters in your area with whom you may share patient data with electronically.
We will meet with you to answer questions. If you want to proceed, we will work toward implementation with you, including providing you with materials to help inform other members of your health system of the Alloantibody Exchange's clinical benefits.
As a non-profit, donations are critical to our success. The donation link is at the top of the page.
Beginning at the top of the page, choose 'Get Started' to receive your Project Plan code then login with the 'Project Plan' link.
Click the "Schedule a Meeting" button at the top of the page.
Find our email here under the "About Us" header.
Patient data privacy is primary concern for us as well. We will work with your health system IT to perform a security review. This does not involve blood bank staff. It is also helpful to remember the scope of this project only includes information relative to providing appropriately matched blood products. Patients with special transfusion requirements generally make up 1% of a health system’s patient population, and the information collected from this 1% includes only alloantibody, antigen, and special transfusion requirements. We do not collection information on a patient simply because they had a type and screen. We do not collect diagnoses, medications, or billing information. Our focus is very narrow.
We have read and annotated the HIPAA regulations line-by-line to ensure we comply fully. Read our documentation here. Sharing patient information is allowed under HIPAA. It does not require informed consent for the treatment of patients. See HIPAA 165.506(c)(2) on page 84, “A covered entity may disclose PHI for treatment activities of a healthcare provider”. We will work with your health system IT to review HIPAA requirements. This does not involve blood bank staff.
We employ automated procedures developed by a review of health information exchanges to identify patients across systems. We use six patient identifiers: first name, last name, date of birth, birth sex, ABO, and Rh. Although imperfect without a unique national medical identifier, health information exchanges do function successfully in many states. For each patient’s transfusion requirements, we do provide the origin of the information, allowing further dialogue as needed.
Additional details are available on your Project Plan at the top of the page. (Use 'Get Started' to receive a code if you do not have one.) In Project Plan, see the Documents tab. For additional help, click the "Schedule a Meeting" button, also at the top of the page.
President, Founder
Yale University School of Medicine
Director of Communications
Board Member, Founder
Yale University School of Medicine
Board Member, Attorney
Board Member
Yale University School of Medicine
Consultant
University of Florida
Director of Special Projects
Director of Software
Board Member Emeritus
University of California, Los Angeles
