Research Projects

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Pregnancy Research Project

Click here to learn more and enroll in the Pregnancy Research Project

Star Legacy Foundation is very excited about our newest and largest project!  Launched at the Stillbirth Summit in June of 2019, this endeavor holds great promise to learning more about stillbirth risks and management techniques to avoid these terrible tragedies.

Mothers are eligible to participate who are currently at least 18 years of age when participating. She may participate once for each of her pregnancies that meet any of the following criteria:

  • any prior stillbirth regardless of how long ago that might have been OR
  • delivery of a living baby in the last 5 years (regardless of how long that baby may have lived, or still is living) OR
  • mothers who are currently at least 12 weeks pregnant

The Pregnancy Research Project is designed to allow women to contribute the information about that pregnancy to science!  The first part part is a maternal survey designed to document aspects of the pregnancy and mother’s experience that are not reflected in the medical records.  The second part will include a review of the prenatal, delivery and postnatal and newborn 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.

.  Contact us at research@starlegacyfoundation.org for more information.

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.  We are currently registering participants for Minnesota Focus Groups.  To learn more about this project or how to participate, click here.

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, 2017 and 2019).  Read the proceedings from these conferences below:

Proceedings of the Stillbirth Summit 2011 (PDF)

Proceedings of the Stillbirth Summit 2014 (PDF)

The next Stillbirth Summit will be held in June of 2021. Contact us 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 finalizing 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.

 

Participate in Other 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 research@starlegacyfoundation.org

 

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