Have you experienced a miscarriage? If so, consider joining the HOPE registry.
Anna and Amal have conceived 3 pregnancies that ended in loss. The first had bleeding and miscarriage at 8 weeks without any testing. The second was a chemical pregnancy – a pregnancy test was only positive for a week. The third was detected at 6 weeks and genetic testing turned out normal. Anne was told all other tests were normal as well. They are not sure whether they want to try again but hope they can help others by telling their story. They fill out a short online survey and are sent a package in the mail to each collect DNA from a saliva sample.
A patient registry is a powerful tool to allow researchers to study observational data on a group of patients with a disease or condition. The HOPE registry will collect patient histories and pregnancy outcomes, combined with banked DNA samples to analyze genomic predictors of different types of pregnancy loss and patient responses to common treatments. Registries allow researchers to make novel discoveries faster than collecting patient data and samples one study at a time. The most direct way to study pregnancy losses is to have access to miscarriage tissue or DNA. Depending on where you had care for your miscarriage or testing, there may be tissue still available that you can donate to our research.
We are seeking...
Patients of all genders who have experienced one or more pregnancy loss that was sent for genetic testing. We are also seeking patients who have had 2 or more pregnancy losses to participate, even if their prior miscarriages have not been tested for chromosomes.
Participants in the registry will be sent a survey periodically to track changes in their health, pregnancy journeys, and lives overall. In addition, if you agree, we will send you a DNA collection kit that will allow you to send us a DNA sample in the mail. Registry patients contribute to the size of our specimen bank and provide valuable clinical data that will accelerate the pace of discovery in the understudied field.
If another miscarriage should occur during the follow-up time, you may donate additional tissues to the biobank, as these will be valuable for validation studies.
Am I eligible for the HOPE Registry?
What happens if I am eligible for the Hope Registry and consent to participation?
Eligible couples from the registry will be invited to join our Genetic Sequencing cohort.