What is a patient registry?

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.

The Need

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.

The Objectives

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.

What we can accomplish with our patient registry

Our patient registry will be used to provide the scientific community with a large cohort of alloimmunized pregnancies in one place. It will allow members to access and sort through data about specific terms (i.e. retrieve all data about the use of phenobarbitol), see how frequently an event has occurred (e.x.: plasmapheresis is used in <3% of all pregnancies though it could have been beneficial in 57%.), and to facilitate additional research. Data from this patient registry can be used for physician education as part of the Allo Hope Foundation’s mission. By having accurate, reliable data from de-identified patient medical records, we have quality data that will drive changes in physician attitude, monitoring, and treatment methods. In addition to providing valuable insight into multiple alloimmunized pregnancies, this registry could also help governing bodies such as the FDA, EMA, and MHRA weigh the risks/benefits of novel treatments during the drug approval process. This registry will be flexible, continually updating, and available for years to come. In the future we may see an increase in the use of pharmaceutical interventions, a decrease in the amount of intrauterine transfusions performed, an increase in overall survival rates, and so much more.

We could potentially find out:

• What treatment and monitoring methods are being utilized.
• Changes in monitoring and treatment methods over time.
• How many preventable deaths or injuries occurred.
• The frequency that pharmaceutical interventions such as IVIG and phenobarbital are utilized.
• Geographic areas where patients have fewer monitoring and treatment options. This could lead to focused efforts to increase physician education and awareness of novel treatment options.
• Correlations between geographic distribution, ethnic demographics, and antibody frequency.
• What treatment options make the largest difference in neonatal outcome.
• The risks/benefits of current and future treatment options.

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