Research Projects

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Needs Assessment

A research team at Star Legacy Foundation is currently conducting a research study of parents who have experienced a stillbirth and health professionals who work with families experiencing perinatal death. The aim is to identify what parents need from the time they learn their baby has died or will not survive through the first two months after the baby’s death. This study is currently being conducted in Minnesota. Phase two will repeat the study in other states including New York, Michigan, and California. To learn more about this project or how to participate, contact us at info@starlegacyfoundation.org

Stillbirth Summit

The Stillbirth Summit is a unique medical conference focused on issues around stillbirth and related perinatal losses.  The roundtable format encourages dialogue amongst the panel of researchers from around the world.  Our final session involves a workshop involving all participants to think ‘outside the box’ and collaborate on projects that will improve efforts toward stillbirth prevention.  Researchers, health professionals, and families are all welcome to join us in “Partnering for Prevention”.

Three Stillbirth Summits have been held (2011, 2014 and 2017.  Read the proceedings from these conferences below:

Proceedings of the Stillbirth Summit 2011 (PDF)

Proceedings of the Stillbirth Summit 2014 (PDF)

Proceedings of the Stillbirth Summit 2017 (in preparation).

The next Stillbirth Summit will be held June 19-21, 2019 in Bloomington (Minneapolis), Minnesota. Visit our Events for more details as they are available including the Call for Abstracts, Registration, and Sponsorship and Exhibitor Opportunities.

STARS Study

The Study of Trends and Associated Risks for Stillbirth (STARS) Study was created by an international team of researchers and conducted in 2012-2014. The goal of this project was to quantify the experiences of many mothers who have had stillborn babies in order to provide appropriate data for researchers. The need for this study was identified during the first Stillbirth Summit in 2011.

The STARS Study was a Cohort study design with nested case-control arm. The cohort  was: 1,713* unique women who had experienced a stillbirth >3 weeks prior to enrollment. Case-control: 153 unique cases who had a stillbirth ≤ 3 weeks prior and 480 unique controls who had had a recent live birth or who were still pregnant.

Data Availability

The raw clean data from the STARS cohort and case-control study are held on Excel spreadsheets by Star Legacy Foundation. Members of the STARS consortium can now request specific data from this dataset from Star Legacy Foundation. This process will enable a record of who has the data and broadly what it will be used for in order to minimize potential duplication of publication and maximize collaboration between consortium members.

The database is not currently available outside of the consortium members. Consortium members are asked to complete the “Application for Use of Data from the STARS study

* The report of the main findings from the cohort indicate that there were 1714 participants but on finalising the database  ready to be made available an additional duplicate entry was found and removed making the new number of participants 1713.

Analysis & Findings

Analysis of the data continues and the researchers are presenting their findings in journals and at conferences around the world:

An international internet survey of the experiences of 1,714 mothers with a late stillbirth: the STARS cohort study (PDF)

Follow-up studies are being planned that will further investigate the results of the STARS Study. Visit this site in the future for updates on these research projects and opportunities to participate.

Pregnancy Research Registry

Star Legacy Foundation is very excited about our newest and largest project!

The Pregnancy Research Registry is designed to allow women who have had a baby in the last 15 years (regardless of outcome) contribute the information about that pregnancy to science!  The first arm will include a review of the prenatal, delivery, and postnatal medical records.  The second arm is a maternal survey to document aspects of the pregnancy that are not reflected in the medical records.

This wealth of information will allow researchers to request and collect certain data points from eligible women without the time and expense of finding and enrolling them individually.  Any pregnancy could potentially provide valuable information for dozens of research studies!     All data will be de-identified to protect the privacy of the individuals who enroll.

The Pregnancy Research Registry is expected to launch in 2017.  Contact us at info@starlegacyfoundation.org for more information or to be notified when enrollment begins.

Participation in Research

Star Legacy Foundation will share information about known research studies that are recruiting participants. Please click here if you are eligible to join. If you are a researcher and would like your study to be included in this list, please contact us at info@starlegacyfoundation.org

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