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The STARS Study is underway!

September 22, 2012 1 comment

By Lindsey Wimmer, MSN, CPNP

The STARS Study is underway!! We at the Star Legacy Foundation are incredibly excited to share this news with you!

One year ago at the Stillbirth Summit, a group of researchers, organizations, and stillbirth families began discussions about designing a research study. This group worked diligently over the last several months to create an online survey for this purpose. STARS (Study of Trends and Associated Risks for Stillbirth) was born and it is now open!

We have had great responses, a lot of interest, and also several questions. In case you have the same thoughts, here are the top 10 Frequently Asked Questions about the STARS Study.

1. What is the purpose of this study? – This study was designed to replicate portions of the Auckland Stillbirth Study to learn more about its findings. The other researchers at the Stillbirth Summit and stillbirth organizations provided input for additional questions to learn as much as we can.

2. What will be done with the data collected? – The researchers involved will use the information relative to their individual work. Their teams will analyze the information to determine if any conclusions can be made. If so, it may support their current/other research studies or it may spark a new concept for researchers to evaluate.

3. Who are the researchers? – The STARS Study team members are:

*  Jane Warland, RN, RM, PhD, University of South Australia; Adelaide, South Australia

*  Louise O’Brien, PhD, MS; University of Michigan; Ann Arbor, MI

* Jason Collins, MD, MCR; Pregnancy Institute; New Roads, LA

* Alex E P Heazell, MBChB, PhD; University of Manchester; Manchester, UK

* Jennifer L Huberty, PhD; University of Nebraska Medical Center; Omaha, NE

* Jamie A McGregor, MD, CM; University of Southern California; Los Angeles, CA

* Edwin A Mitchell, MBBS, FRSNZ, FRACP, DSc; University of Auckland; Auckland, New Zealand

* Mana Parast, MD, PhD; University of California San Diego; San Diego, CA

* Tomasina Stacey, RM, PhD; University of Auckland; Auckland, New Zealand

* Lindsey J Wimmer, MSN, CPNP; St. Catherine University; St. Paul, MN

The STARS Study Coordinators are:

* Shauna Libsack, Star Legacy Foundation

*  Sherokee Ilse, Babies Remembered

* Marti Perhach, Group B Strep International

* Candy McVicar, Missing GRACE Foundation

4. Is this study IRB approved? – This study was reviewed by the IRB at the University of Michigan and determined to be exempt. All IRB regulations regarding exempt studies have been met. IRB #HUM63655  If you’re wondering what an IRB is – an Institutional Review Board is a required function at any organization that conducts research with people.  The primary responsibility of the IRB is to be sure that research involving people is conducted with full informed disclosure and consent and is conducted ethically.

5. Who can participate? – We need women from the following three groups to complete the survey:

*  Women who are currently at least 28 weeks pregnant or who have given birth to a live-born baby in the last 3 weeks

* Women who have had a stillbirth after 28 weeks gestation in the last 3 weeks

* Women who have ever had a stillbirth after 28 weeks of gestation

Click here to participate in the study!

6. I live outside the US or did when my child was born. Can I participate? – Absolutely! This is an international survey. The more women who participate from around the world and around the US, the better our results will be.

7. Why are only stillbirths after 28 weeks being considered? – The study was designed to replicate portions of the Auckland Stillbirth Study. In this study, they evaluated late stillbirths (after 28 weeks). To make our results relevant to their findings, we needed to have similar criteria. In addition, this is an international study and there is not a clear definition between various countries about what gestation is considered a stillbirth. It does not change the importance of what can be learned from all types of pregnancy loss, but research rules require strict boundaries on some items.  Please know – that all babies are important to us and we have visions of additional research that would include earlier pregnancy & infant loss.

8. What about me? My stillbirth occurred before 28 weeks? – We appreciate your interest and willingness to help! We recognize the significance of earlier pregnancy losses and intend to have additional studies in the future that will be focused on those babies. I hope you’ll be willing to participate when we have more projects available!

9. How can I help?The best way to help with this study is to participate if you qualify, and to share the information with anyone else you know who may be interested, willing, and able to participate. The more women who complete the survey, the more we will learn. The faster we are able to get women to complete the survey, the sooner we will have information to share!

10. How can I learn about the findings? – The researchers will be writing papers regarding their analyses. We will definitely share any and all official findings on our website and on our facebook page. If you would like to receive an email when these findings are published, send an email to: info@starlegacyfoundation.org.

If you have other questions regarding this study, please contact me at lindsey@starlegacyfoundation.org .

THANK YOU for your help and support!

Copyright 2012 © Star Legacy Foundation

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Thinking outside the box……

September 5, 2012 1 comment

Last October, Star Legacy Foundation hosted the Stillbirth Summit 2011.  After thinking about this type of an event for a while, we decided to pull the trigger and make it happen!

There are so many fantastic people working on stillbirth prevention around the world.  Looking through some of those efforts, we discovered some similarities and overlapping concepts that were very exciting.  Our minds wandered to ‘what if’ we could get these brilliant minds in the same room to share their findings.  The biggest winner of that type of event would be the babies!

The focus was on stillbirth topics that are emerging ideas and ‘outside the box’ thinkers.  We needed people who are open-minded and looking at all aspects of this considerable problem.  We got just that – and so much more!!  Fortunately, we had a great response from these researchers who were all very willing to participate.

The topics included infection, hypotension, thrombophilias, sleep, placenta, cord, and fetal movement.  Researchers included Dr. Harvey Kliman, Dr. Uma Reddy, Dr. Mana Parast, Dr. Moraji Peesay, Dr. Louise O’Brien, Dr. Jane Warland, Dr. Alex Heazell, Dr. Ed Mitchell, Dr. Tomasina Stacey, Dr. James McGregor, and Dr. Jason Collins.  The discussion was lively and very educational.  Even better, at the end of the presentations, everyone worked together to discuss ways to work together and identify new projects needed.

One of the outcomes discussed was the publication of the presentations from the Summit.  Dr. Mitchell and Dr. Heazell took a leadership role and each researcher wrote a summary of their presentation.  The combination of these efforts was a summary of the Proceedings of the Stillbirth Summit 2011.  We are thrilled to announce that this article was just published!

It is so important to have these topics and this information in the medical literature to help the cause of stillbirth prevention.  Please take a moment to read the article, share it with your friends, and share it with your health care providers.  Every little bit learned is one step closer to being able to prevent many, many stillbirths.

I am extremely grateful for the researchers who participated so eagerly and the many, many volunteers who helped make this event a reality.  We are looking forward to the next Stillbirth Summit – in 2014!  But for now, we take a moment to savor this accomplishment and say thank you to the researchers for sharing their findings with the world.

Click here to read the Proceedings of the Stillbirth Summit 2011

as published in

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About the author:

Lindsey Wimmer, a Pediatric Nurse Practitioner, is Mom to four children; Garrett, stillborn in 2004, Grant, Bennett and Austyn. Lindsey is an adjunct instructor of pediatrics at the St. Catherine University in St. Paul, MN and also teaches pediatric and obstetrical nursing  at Hennepin Technical College in Eden Prairie, MN.   Lindsey and her husband Trent founded the Star Legacy Foundation shortly after Garrett’s birth when realizing that the numbers of stillbirths in the US were staggering and that very little was being done to determine the causes or find prevention initiatives. Visit the Star Legacy Foundation to learn more.

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