A patient registry is a large collection of data from alloimmunized women and infants with HDFN. The registry collects information about your pregnancy with antibodies such as your titers, what treatments you received, and what the outcome of your pregnancy was. After processing the information, AllStripes 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. As a result, prenatal care and outcomes for babies with HDFN will improve. 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. You can join the registry at www.allstripes.com/hdfn.
Large scale studies on alloimmunized pregnancies are few and far between. As a result, some of the pharmaceutical treatment options for HDFN that have been in use for over 50 years are not commonly used. Despite multiple case reports and small studies on the efficacy of various treatment methods, many physicians do not utilize all of 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 contact with hundreds of alloimmunized women. A patient registry is a vital resource that will benefit the scientific, physician, and patient communities immensely.
AllStripes will gather reliable data about what is actually happening in alloimmunized pregnancies. All data that the patients have chosen to share will be de-identified for safety. Our patient registry will facilitate scientific research and development and 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, how prenatal care varies by location, how alloimmunized pregnancies are being monitored, 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.Email Us
If you are ready to enroll into the Allo Hope Foundation's patient registry, please click the button below.Enroll Now