A patient registry is a large collection of data from alloimmunized women and infants with HDFN. The registry collects information such as your titers, what treatments you received, and what the outcome of your pregnancy was. It combines the data from all of the women who sign up and provides researchers with the largest collection of data from alloimmunized women to study. Our mission is to prevent any harm, stillbirth or infant death caused by alloimmunization and HDFN. We are dedicated to providing patient advocacy, support and education while promoting research and improving healthcare practices for the condition. One of the ways that we can promote research and improve healthcare practices is by creating and maintaining a patient registry.
Large scale studies on alloimmunized pregnancies are few and far between. Pharmaceutical treatment options for HDFN have been in use for over 50 years, however these treatments are still not commonly employed. Despite multiple case reports and small studies on the efficacy of various treatment methods, mainstream physicians do not utilize the treatment options available to them. Why? We believe that the lack of a large-scale, single database of alloimmunized pregnancies, laboratory assessments, and outcomes is a major contributor to the underutilization of available treatment methods. The Allo Hope Foundation has access to ~800 alloimmunized women and expects at least 20% participation. A patient registry is a vital resource that will benefit the scientific, physician, and patient communities immensely.
We will gather reliable data about what is actually happening in over 100 alloimmunized pregnancies. Our patient registry will facilitate scientific research and development, use the data gathered to spur changes to patient care and improve pregnancy outcomes. We want to discover: what the current state of pregnancy care is and how it varies by location, what treatments women are receiving, and what their pregnancy outcomes were.
We are happy to answer any additional questions about the registry or enrollment process. Simply contact us and we will get in touch with you shortly.Contact Us
If you are ready to enroll into the Allo Hope Foundation's patient registry, please click the button below.Enroll Now