If you think it’s an AFE, call us! 1-307-363-2337 (1-307-END-AFES)

If you think it’s an AFE, call us!

1-307-363-2337 (1-307-END-AFES)
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AFE Research
Registry & Biorepository

  • Last Updated: February 11, 2025

Help Prevent Amniotic Fluid Embolism

A patient registry is a place where medical information, family history and other related medical and non-medical information from patients is collected and stored for medical research. This information will be helpful in better understanding individual cases of AFE, commonalities, treatments, as well as learn the long-term health of those who have survived an AFE.

Amniotic fluid embolism (AFE) is a rare occurrence making it difficult to study. The AFE Foundation and leading AFE researchers have established the Amniotic Fluid Embolism Registry and Biorepository at the University of Texas Health Science Center at Houston (IRB HSC-MS-21-1004) to allow researchers the ability to advance their knowledge of the condition and develop a means for prevention and treatment.

Surviving patients or family members of a loved one lost to an amniotic fluid embolism are encouraged to submit their case. 

Submit a Case

Frequently Asked Questions

What information are you gathering?

We are collecting data from women who were medically diagnosed or presumed to have suffered an amniotic fluid embolism. The types of data collected will include any or
  1. Prenatal records
  2. Medical records from the hospital where the AFE birth took place
  3. Death Certificates, Autopsy or Medical Examiner Records
  4. Medical history questionnaire and any additional documentation for previous or subsequent pregnancies.
Since AFE is a diagnosis of exclusion, many times patients or their family members are told the complication is an AFE however, the medical records do not state an AFE diagnosis. Terms often used are “presumed” or “possible”. You may still submit your enrollment forms.

Yes. You will need to provide adequate proof that you have the legal authority to submit enrollment paperwork. Our research coordinator will work with you to determine the proper documentation needed.

Yes. The Registry is available to participants anywhere in the world. However, since each facility, state, and country have their own regulatory requirements, further documentation may be needed for those outside of the United States.
Yes.  A parent or guardian will need to review the consent form with you.  Both you and your parent or guardian will need to agree for you to participate.
For immediate needs please contact the AFE Hotline at 307-363-2337 (1-307-END-AFES). For less urgent questions, please email  info@afesupport.org. For questions about the IRB or to reach our team at UT Health Science Center, please contact Sunbola Ashimi, PhD at 713-500-6410 or sunbola.s.ashimi@uth.tmc.edu.
The AFE Foundaiton is the sponsor of the AFE Registry and Biorepository. There is no cost to be a participant of the AFE Registry. As a 501(c)(3) non-profit organization, the Foundation’s mission is made possible through individual and corporate donations.  If you would like to support this and/or other initiatives, please consider a gift to the Foundation in honor or memory of a loved one or as a general donation. Please contact Miranda Klassen, Executive Director, to discuss corporate or major gift support at miranda@afesupport.org.
Sometimes a registry may also be linked to a biobank: a place that stores tissue, blood or other samples from patients.  The AFE Patient Registry has developed a biobank where some participants may be invited to provide a saliva sample from which we will extract DNA.  When first enrolling in the registry there will be a section on the consent form where you can give your permission for us to contact you about donating a biological specimen for research.  If you are invited to participate in the biobank, you will need to agree to a separate consent form before enrolling in the biobank.

Your personal information such as your name, address, or other information that identifies you or your family will be labeled with a code number, encrypted, stored in a secure place and protected with a password. Only authorized investigators will have access to the code and be able to identify you, if needed.Your identifiable information will not be shared with anyone outside the Registry. Approved scientists, researchers, and clinicians, will be given only the de-identified information and may search the de-identified data for patients for their studies. We call this information “de-identified” because all personal identifiers have been removed.

All other information (such as hard copies of records) will be stored in locked files and destroyed in accordance to the standards established by the HIPAA Privacy Act. To review the entire HIPAA Privacy Act, and for information about how it applies to patients, visit the HIPAA Privacy rule website.

Insurance companies are not permitted access to research records, and participants do not have to tell their health insurance companies that they have participated in a research project.  Research is different from clinical care.  Research records are not a part of a person’s medical record.

The Genetic Information Nondiscrimination Act (GINA) of 2008 is intended to prohibit the improper use of genetic information. GINA provides comprehensive protection to individuals so that they may avail themselves of genetic diagnostic tests for the advancement of their individualized medical care without the threat of discrimination from insurance companies based on their personal genetic makeup. To review the entire Genetic Information Nondiscrimination Act of 2008 and other helpful information regarding GINA, go to http://www.genome.gov/11510239.

After enrollment in the registry, and with your permission, you can expect the following:
 

  1. To be contacted by email or phone at least once a year to update your information.
  2. Answer new questions as we or outside researchers have new ideas to explore.
  3. Your information will be combined with others’ and shared with researchers, but your identity will not be shared.  Your privacy remains our top priority.
  4. You may be contacted about donating a sample of blood, tissue, or other biological specimen.  (If you decide to donate a sample, you will need to provide separate consent)
By reviewing your medical records pertaining to your pregnancy and birth we are able to retrieve vital information on the specifics of your care such as heart rate, medications, interventions, timing of activities, etc. This is very important to our research studies.  The Registry will remove your personal identifying information (name, date of birth, etc.) from your medical records and replace it with a code before your records are ever shared with other researchers, databases, or registries.
There is minimal risk in being a Participant of the Registry.  The Registry questionnaire includes questions that can be sensitive, and may elicit an emotional response, or something that you may feel uncomfortable answering.   You do not have to share any information you do not want to.

Should you change your mind and wish to withdraw your data from the AFE Registry, you will be free to do so without providing any explanation.  However, information accessed prior to the request for removal cannot be retrieved from researchers that have already accessed it.  You may withdraw your participation by writing an email to or by writing a letter to:

AFE Foundation
1611 S. Melrose Drive
Suite A #152
Vista, CA 92081 

The AFE Registry is most valuable when your information is kept up-to-date.  Please email any changes to your records to registry@afesupport.org.
We can accept cases up to ten years prior and if the medical records are available. Most hospitals keep records for 7-10 years. For cases over 10 years old, you would need to have a complete copy of your medical records to be included in the registry.
Yes, we would be happy to provide you with a copy of the records we receive. Simply ask for them when speaking with a member of the research team.

Ways the AFE Foundation Can Support You

You are likely shocked and being forced to make difficult decisions right away. We do want to inform you there is a time-sensitive opportunity to participate in a research study.

There are critical blood specimens that will be otherwise discarded that could instead be sent to us for our study. We would not ask for any additional specimens to be taken from your loved one.

We believe blood and tissue specimens from these women hold critical clues. It can help researchers understand the condition. They could develop a means for prevention and treatment so that no future mothers and babies will die. To learn more or to begin the process of enrolling your loved one contact us at 1-307-END-AFES (1-307-363-2337).

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The AFE Foundation is funded by donations. Every dollar goes toward our support, research, and education programs. We are committed to turning donations into action, including yours.

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