Why are we interested in patient-powered research?

The Allo Hope Foundation's 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. We are interested in patient-powered research because we believe that patients have unique insight into their rare disease and can accelerate treatments for our community. Your (or your child’s) medical records contain clues that can lead to new treatments and help researchers understand what would improve our quality of life. One of the ways that we can promote research and improve healthcare practices is by creating and maintaining a collection of pregnancy data and outcomes.

AllStripes is a research platform that will gather a large collection of data from alloimmunized women and infants with HDFN. They will collects information about your pregnancy with antibodies such as what antibody you have (anti-D, anti-E, anti-K, anti-S, anti-M, anti-Lea, anti-Kpa, etc), 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. By joining AllStripes, you can contribute your de-identified medical records to multiple research efforts for Alloimmunization & HDFN without leaving home. AllStripes will do the work to collect your information, and you’ll receive all your records in your secure account, at no cost. You can join the research 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. Your (or your child's) medical records contain clues that can lead to new treatments and help exisiting treatments. Our research platform 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 data will facilitate scientific research and development and spur changes to patient care thus improving 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. AllStripes researchers learn from patient records what would truly improve quality of life.

What we can accomplish with our research

The AllStripes research platform will be used to provide the scientific community with a large cohort of alloimmunized pregnancies in one place. Data from this cohort 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 data could also help governing bodies such as the FDA, EMA, and MHRA weigh the risks/benefits of novel treatments during the drug approval process. The AllStripes Alloimmunization & HDFN Platform 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.

These questions could be answered eventually:

While the exact research questions and population insights have not been finalized yet, we may discover things such as:

• How your rare disease journey compares to others with your condition, and what’s helping.
• What treatment and monitoring methods are being utilized.
• Changes in monitoring and treatment methods over time.
• The frequency that pharmaceutical interventions such as IVIG and medications to mature the babys liver 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.
• What treatment options make the largest difference in neonatal outcome.
• The risks/benefits of current and future treatment options.

Our community’s de-identified records can advance multiple treatment studies. You can be part of multiple research efforts, without leaving home.

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