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 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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Who can particpate in the patient registry?


Anyone in the world can sign up for the registry. Currently AllStripes is able to gather records from women in the US and Canada. In late 2021, we anticipate that records will be available from Europe. Women in other countries are encouraged to sign up and they will be notified when records can be collected in their country.

We want to find out what the state of the art care is in the US. We do not know exactly what is being done in the US and if the current guidelines are being met. Care for women in Florida looks very different from care received in Texas or Michigan.

We may discover information such as:
Sensitizing events data: How many women are sensitized via a silent bleed, trauma, etc?
Titer levels: What percentage of women have an increase in titers in the third trimester? How many women have an increase in titers after a procedure such as an amniocentesis?
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?
Effects of maternal medications on neonatal outcomes: Does phenobarbital decrease neonatal bilirubin levels?
We may want to learn about maternal mental health in pregnancies with HDFN vs other pregnancies.

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.

With AllStripes you have the choice of what data you share and whom you share it with. You can choose to withhold any sensitive information.

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.

Once! The initial set up takes about 5-10 minutes to input your data and where AllStripes should collect your medical records from. After that, AllStripes will periodically retrieve your information. If you have multiple pregnancies at the same hospital (one before registration, and one after registration), AllStripes will collect records from both pregnancies.

Your personal information (names, doctors, etc) is anonymous to everyone except the staff working on the registry. Doctors, researchers, and other patients will never see your name, address, or identifying information.

"If you consent to participate in AllStripes research, you give us permission to use your de-identified information (information that does not contain personal details such as your name, email, or contact information) to enable research. It is your decision whether to contribute your de-identified data to research. If you agree, rare disease researchers can analyze your de-identified data along with data from other individuals to generate insights and advance new therapeutic programs. You can even decide to change your decision later. We will never share your personal information with anyone without your explicit permission." - AllStripes FAQ

"If you consent to participate in AllStripes research, you give us permission to use your de-identified information (information that does not contain personal details such as your name, email, or contact information) to enable research. It is your decision whether to contribute your de-identified data to research. If you agree, rare disease researchers can analyze your de-identified data along with data from other individuals to generate insights and advance new therapeutic programs. You can even decide to change your decision later. We will never share your personal information with anyone without your explicit permission."
- AllStripes FAQ

Please check out the AllStripes FAQ for additional questions or email support@allstripes.com.

How to Enroll

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

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