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6 days ago · FAQs on Umbilical Cord Blood Banking and Use in HLHS

AA hands on preg belly

We get a lot of questions about banking umbilical cord blood (UCB).  Below, we answer some frequently asked questions on the different options that are available.  If you’d like more information on UCB, why it’s collected, and stem cells, you can read our blog post from September 2016.

 

Q.  What are the options for saving a baby’s UCB at birth?

A.  There are three main options:

Public Banks

Healthy parents and babies are able to donate UCB to a public bank where it may be used by someone else battling a disease or for future research.  For more information on public banks, visit Be The Match® which was selected by the US government to operate the nation’s Cord Blood Coordinating Center under the 2005 Stem Cell Act.

— Pros:

Donating UCB from a healthy baby may provide a treatment for an individual with certain diseases, like some forms of blood cancer.  Because the problem that caused the disease in the first place is still in the person’s blood, they must get a transplant from someone else (a donor).  There is no charge to donate UCB to a public bank.

— Cons:

Because the mother, father, and baby must all be healthy and meet certain eligibility criteria, not everyone is able to donate.  Also, because of strict collection and processing standards, hospitals in many states are not yet able to collect UCB for donation to public banks.

Private Banks

There are numerous private cord blood banks that charge fees to collect and store UCB.  Because some research has shown that certain diseases, like some blood cancers, can be treated with an individual’s own stem cells from UCB, parents can choose to store UCB in a private bank in case the child develops a disease in the future.

— Pros:

While there is little data on the outcome of transplants using privately banked cord blood, there have been a few successful cases reported.  Parents may be interested in purchasing “biological insurance” in the event that their child develops a condition that is treatable with his/her own stem cells.

— Cons:

Not all diseases are able to be treated with an individual’s own cord blood cells, and many patients need a transplant from a donor.  Collection and storage with private banks typically cost an average of $1,800 for the first year, with annual storage fees of around $150.  In addition, data on the quality of cord blood stored in some private banks and whether it will remains viable in the long-term are still unclear.

Directed Banks

These banks collect UCB for a specific purpose.  For example, the Todd and Karen Wanek Family Program for HLHS collects, processes, and stores stem cells from the UCB of babies diagnosed with HLHS before birth.  The Program currently has a clinical trial open at six hospitals in the HLHS Consortium using these stem cells to help strengthen the heart during a baby’s surgery.

This is different than treating a disease that may develop later because a baby must be diagnosed with the condition before birth.  The goal of the HLHS Program’s directed bank is to learn whether stem cells from UCB can be used to help regenerate or strengthen the heart which was affected by a medical condition before birth.  In this case, stem cells from a donor can’t be used because they may be rejected by a baby’s body.

— Pros:

If a baby has been diagnosed with a specific disease before birth, banking cord blood with a directed bank may allow them to participate in clinical trials using their own stem cells in the future.  There is no cost to bank UCB with the Mayo Clinic HLHS Program.

— Cons:

Directed banks are only open to babies diagnosed before birth with certain medical conditions.  Research using UCB for regenerative purposes is new and there are few directed banks available.  Because all research at directed banks like the Todd and Karen Wanek Family Program for HLHS is conducted according to FDA regulations and there are restrictions for eligibility, not everyone is able to have a baby’s UCB collected and stored.

 

Q.  I’ve heard of “Directed Donor” donations where UCB from a healthy baby is collected to treat a sibling or relative with a certain disease. If my child has HLHS, can a relative’s UCB be donated to him/her?

A.  Our current clinical trial uses autologous (a baby’s own) stem cells.  At this time, we do not know if stem cells from a relative would help a baby with HLHS.  Cells from a relative are not always a match for an individual, and may be rejected by the body.

 

Q.  How many individuals actually use UCB stored for them in a private bank compared to a directed bank?

A.  According to the American Society for Blood and Marrow Transplantation, “The probability of using one’s own cord blood is very small … probably as low as 0.04% to 0.0005%”(1).  Dr. Susana Cantero Peral with Mayo Clinic’s HLHS Program says that more recent data has confirmed that collection vs. usage rates at private banks still remain consistently low. “Many people never develop a disease that requires a stem cell transplant, and unfortunately many who do require cells from a donor and can’t use their own,” she says.  In addition, private banks are not subject to the same quality control rules as public and directed banks, so the samples are not always viable after long-term storage in some private banks.  Samples stored in public banks are 30 times more likely to be used than those stored in private banks.

The HLHS Program’s directed bank has collected 153 UCB units since 2012.  Twenty-two of these UCB units were then used in clinical trials at hospitals across the United States to inject stem cells back into a baby’s own heart during surgery.  Dr. Cantero Peral says:

“When we look at samples from our HLHS Consortium sites alone, we’ve collected 81 samples and have used 21 of them in clinical trial injections.  So 14-26% of our collected samples have been able to be delivered back to individual babies.”

 

Q.  If I store my baby’s UCB in a private bank, can I take it out and use it in a clinical trial like the HLHS Program offers?

A.  Unfortunately, the way private banks process and store the UCB destroys it for potential use in a clinical trial in the HLHS Program.  Our research is conducted under strict FDA regulations, so the UCB must be processed and stored according to the guidelines for our specific trial.

 

Q.  Can I store UCB in more than one place?

A.  The blood volume remaining in the cord and placenta after baby’s delivery is usually low, and only about 8 teaspoons of blood can be collected from the umbilical cord.  Because the number of cells is strongly correlated with the volume collected, it is not recommended to split UCB in order to have more chances of being used.

 

Q.  What happens to my baby’s UCB if I store it with the HLHS Program?

A.  There are four possible outcomes of samples banked with the HLHS Program:

  • The sample may be eligible for use in our Phase II clinical trial in which a baby’s own stem cells are injected back into the heart during the 2nd Stage Glenn surgery.
  • The sample will be stored at -196°C and may be eligible for use in future clinical trials.
  • You may choose to donate the sample to the Program for future research.
  • You or your child may request to have the sample discarded.

 

Q.  Who should I talk to when deciding whether to bank my baby’s UCB?

A.  You can discuss your options with your OB/GYN, pediatrician, or family provider.  Both the American College of Obstetricians and Gynecologists (ACOG)(2) and the American Academy of Pediatrics (AAP)(3) have published position statements discouraging the use of private banks for healthy families.  They also note you should ask if your healthcare provider has a financial or other conflict of interest with any private, for-profit bank when discussing your options.

 

  1. American Society for Blood and Marrow Transplantation. 2008. Collection and Preservation of Cord Blood for Personal Use. Bio of Blood and Marrow Trans. 14:356-363. 183-8791/08/1403-0001. doi: 10.1016/j.bbmt.2007.11.005
  2. February 21, 2019. American College of Obstetricians and Gynecologists. https://www.acog.org/Clinical-Guidance-and-Publications/Committee-Opinions/Committee-on-Genetics/Umbilical-Cord-Blood-Banking?IsMobileSet=false
  3. October 30, 2017. American Academy of Pediatrics Encourages Use of Public Cord Blood Banks. https://www.aap.org/en-us/about-the-aap/aap-press-room/Pages/AAP-Encourages-Use-of-Public-Cord-Blood-Banks.aspx

 

 

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email the program at HLHS@mayo.edu to learn more.

Wed, Apr 10 9:13am · The Children's Hospital at OU Medicine Joins HLHS Consortium in HLHS

Burkhart HLHS surgery

Pictured: Dr. Harold Burkhart and team perform surgery on a pediatric patient with HLHS at The Children’s Hospital at OU Medicine.

 

OKLAHOMA CITY, Oklahoma – Mayo Clinic’s Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) and The Children’s Hospital at OU Medicine are excited to announce their collaboration to prevent heart failure in HLHS, a rare and complex form of congenital heart disease.

“The Children’s Hospital at OU Medicine has been involved with our program since 2015, and performed the program’s first umbilical cord blood cell delivery in 2016,” says Timothy Nelson, MD, PhD, director of the Mayo Clinic Todd and Karen Wanek Family Program for HLHS.  “We’re thrilled that they’ve joined the HLHS Consortium because it means that individuals with HLHS will now have more access to participating in groundbreaking clinical trials.”

Read more about this collaboration on the Mayo Clinic News Network.

 

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email the program at HLHS@mayo.edu to learn more.

Wed, Apr 3 9:04am · Sixth Annual IMPACT Symposium to be held on April 6th in HLHS

 

UWECThe Innovative Minds Partnering to Advance Curative Therapies (IMPACT) Program will hold its sixth annual IMPACT Symposium this Saturday, April 6 in Eau Claire, WI.  The Eau Claire Mayo Clinic Health System and the University of Wisconsin-Eau Claire are excited to host the first event at the IMPACT Program’s new home base in Eau Claire.

The IMPACT Program was started at Mayo Clinic in 2014 with the goal of connecting undergraduate students with Mayo Clinic faculty to develop creative solutions to critical health questions.  The daylong event includes poster presentations by teams of two to four students, oral presentations from the top teams, and a keynote address from Dr. Tim Nelson, Director of the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) and Director of Research and Innovation at Mayo Clinic Health System Eau Claire.

This unique competition is designed to foster cross-pollination between undergraduate students and medical professionals, and multi-disciplinary teams are highly encouraged.  This year’s teams were challenged to develop hypotheses to the following question: What is the underlying cause of HLHS?  Students worked alongside Mayo Clinic and Mayo Clinic Health System scientists and physicians to investigate biological pathways that might underlie this rare congenital heart defect and could serve as innovative targets for curative therapies.

Teams will be judged based on the innovation of their hypotheses.  The winning team will receive $1,000 per student and a paid summer internship to do research related to their IMPACT topic at Mayo Clinic, as well as an award plaque for the students’ home institution.  This year, 41 teams from 18 schools across four different states will participate in the 2019 IMPACT Symposium!

We look forward to seeing the exciting proposals from this year’s teams!  For more information, please visit the IMPACT website or contact Sarah Tweedale with the UW-Eau Claire IMPACT Program at IMPACT@uwec.edu.

 

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies.

Fri, Mar 22 12:00pm · Umbilical Cord Blood Collection in a “Bomb Cyclone” in HLHS

Red-heart-in-the-hand-of-a-physician_shutterstock_135683396-1

In mid-March, an HLHS mom delivered her baby at Children’s Hospital Colorado and the umbilical cord blood (UCB) was collected and prepared for shipment.  An inpatient nurse from the Maternal Fetal Care Unit called for pick-up, but there was a problem.  That day, Colorado was experiencing a rare, record-setting “bomb cyclone” storm – essentially an inland hurricane.  Winds gusted to 80 mph, over 1,000 people had to be rescued from highways, and the Denver International Airport was closed for only the fourth time in history.  When even the road to the airport was closed, staff at Children’s Hospital Colorado knew this UCB shipment wouldn’t go as planned.

Hilary Hoffman, a Clinical Research Coordinator at Children’s Hospital Colorado, contacted the Mayo Clinic HLHS and ReGen Theranostics, Inc. teams to let them know about the delay, and ensured the precious sample was properly stored until the weather cleared.  Doug Padley with ReGen and Dr. Susanna Cantero with the HLHS Program reassured the team that although samples should ideally arrive at ReGen within 36 hours of birth, the UCB would still be processed whenever it arrived.  In the end, the sample was delivered to ReGen and processed less than 48 hours after birth!

This isn’t the first time that UCB collection across the HLHS Consortium has been impacted by extreme weather.  In 2017, an HLHS mom in Texas delivered her baby during Hurricane Harvey.  Although the shipment was delayed, the teams followed their procedures and the sample was successfully delivered and processed.  The Children’s Hospital Colorado and ReGen teams worked together during this most recent delay to ensure proper storage and shipment of the sample.  The HLHS Program – along with the new mom and baby – are grateful to everyone involved for their outstanding teamwork!

 

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email the program at HLHS@mayo.edu to learn more.

Tue, Mar 12 12:21pm · Save the Date! Feel the Beat 2019 in HLHS

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Mark your calendars for the Feel the Beat 2019!  The seventh annual event will be held this year on Saturday, October 12th in Rochester, Minnesota.

This exciting event is a great way to meet other families in the congenital heart defect world and will allow you to connect with doctors and researchers working on the latest advancements in hypoplastic left heart syndrome.  This one-day family-friendly event highlights the experiences of patients and families along with ongoing research, and shows how the CHD community is stronger by all of us working together.

Details on guest speakers, panels, activities, and lodging options will be posted closer to the event date, but feel free to send an email to HLHS@mayo.edu if you have any questions!

 

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email the program at HLHS@mayo.edu to learn more.