Patient Registry

Help researchers understand alloimmunization and HDFN

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 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.

The Need

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.

The Objectives

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.

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 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 would 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 physicians are more relaxed with 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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Who can particpate in the patient registry?


The registry is for alloimmunized women in the US and Canada who have been pregnant within the last ~5 years.

We want to find out what the state of the art care is in the US? We do not know what is being done in the US and if the current guidelines are being met. We will have a panel of experts look at the information and determine if preventable deaths or injuries were occurring.

The 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 the women who sign up and provides researchers with the largest collection of data from alloimmunized women to study.

We may discover information such as:
Sensitizing events data: How many women are sensitized via a silent bleed, trauma, etc?
Timing data, such as: When were antibodies first detected? When was fetal anemia first detected?
IUT information: medications administered before/during/after IUT, timing of procedures, frequency, technique, etc. There’s no set protocol for IUTs or data on different ways of doing IUTs.
MoM values and steroids: Were steroids administered? What were the MoM values before and after steroids?
We may want to learn about maternal mental health in pregnancies with HDFN vs other pregnancies

Yes! You can help others dealing with Alloimmunization and HDFN. You can help us know how we can change the standard of care so that any errors that happened to you won’t happen to someone else. Alternatively if your care was excellent, you can help set the new standard of care. Over time as we work towards new research, new education, new standards of care, and new pharmaceutical advances, you may have options that weren’t available to you before.

Your personal information (names, doctors, etc) is anonymous to everyone except the AHF staff working on the patient registry. They will be assigning you a patient number, and that is all that anyone outside of the company will have as an identifier. Doctors, researchers, and other patients will never see your name, address, or identifying information.

Your information will be stored in Google Suite. For more information about HIPAA Compliance with Google Workspace and Cloud Identity, please click here.

Researchers and patients who have participated in the registry will have access to the data.

We will post important updates on our social media channels and it will be visible on our News feed. We will also post information on our website and in our Resource Library.

Do you have additional questions?

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.

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Are you ready to enroll today?

If you are ready to enroll into the Allo Hope Foundation's patient registry, please click the button below.

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