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Mon, Jun 17 11:46am · Ochsner Hospital for Children Joins HLHS Consortium in HLHS

HLHS Consortium Ochsner

NEW ORLEANS — Mayo Clinic’s Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) and Ochsner Hospital for Children are proud to announce their collaboration to prevent heart failure in HLHS, a rare and complex form of congenital heart disease.

Ochsner’s Pediatric and Adult Congenital Cardiac Surgery Program is led by Benjamin Peeler, M.D. who joined Ochsner’s team in 2016 and has brought decades of invaluable experience and leadership to the team.  “Dr. Peeler has been building a team of dedicated professionals, and their work has resulted in a 100% survival rate of the complex Norwood surgery every year since 2017,” says Tim Nelson, M.D., Ph.D., director of the HLHS Program at Mayo Clinic.  “They are passionate about ensuring that all families in Louisiana have access to the best level of surgical care which is why we’re so proud to welcome them to the HLHS Consortium.”

Ochsner is now the eighth member of the HLHS Consortium, which includes six other hospitals: Mayo Clinic, Children’s Hospital of Philadelphia, Children’s Hospital Los Angeles, Children’s Minnesota, Children’s Hospital Colorado, and The Children’s Hospital at OU Medicine.  The HLHS Consortium also includes founding member Sisters by Heart, an advocacy group for parents and families.

Read more about this announcement 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.

Fri, Jun 7 11:04am · Your Guide to Understanding Common Research Terms in HLHS

HLHS Mayo - doctor and patient

                             Demystifying Clinical Trials — Part 2

The clinical research world can sometimes seem confusing. Research teams have many people in different roles, and they may use words that are unfamiliar to people outside of research work.

The guide below defines some commonly used words and phrases. Let us know in the comments below or on our Facebook, Twitter, or Instagram pages if you’d like definitions of other words or parts of the research process!

 

Accrual – the number of subjects who have completed or are actively in the process of completing a study. The accrual goal is how many subjects are needed to finish the study (2).

Adverse event (AE) – a negative symptom or experience encountered by an subject during the course of a clinical trial. Adverse events can be expected or unexpected.

Assent – a minor child’s affirmative agreement to participate in a clinical trial. Failure to object may not be taken as assent.

Clinical research coordinator – a study team member who manages the day-to-day study tasks as directed by the principal investigator. (3)

Consent form – a document explaining all relevant study information to assist the study subject in understanding the expectations and requirements of participating in the trial. This document is presented to and signed by the study subject.

Control arm/group – a comparison group of study subjects who are not treated with the investigational agent. The subjects in this group have the same disease or condition under study, but receive either a different treatment, no treatment, or a placebo.

Data – the objective information gathered during a research study that is used to determine the results of the study.

De-identification – the process of removing identifiers (personal names, dates, social security numbers, etc.) that directly or indirectly point to a person, and removing those identifiers from the data. De-identification of protected health information is essential for protecting patient privacy (4).

Enroll/Enrollment – the process of an eligible participant signing a consent form and voluntarily agreeing to participate in a research study (2).

Ethics committee – an independent group of both medical and non-medical professionals who are responsible for verifying the integrity of a study and ensuring the safety, integrity, and human rights of the study participants.

Food and Drug Administration (FDA) – the agency within the Department of Health and Human Services (DHHS) that enforces public health laws related to research conduct.

Greater than minimal risk – the research involves more than minimal risk to subjects (2).

Health Insurance Portability and Accountability Act of 1996 (HIPAA) – required the Department of Health & Human Services to develop regulations protecting the privacy and security of certain health information (5). The HIPAA Privacy Rule established the conditions under which health information may be used or disclosed by approved entities for research purposes (6).

Hypothesis – a specific, clear, and testable proposition or prediction about the possible outcome of a scientific research study (7).

Informed consent – the process of discussing a clinical trial that goes beyond signing the consent form. The discussion should provide sufficient information so that a subject can make an informed decision about whether or not to enroll in a study, or continue participation in a study. Informed consent is a voluntary agreement to participate in research, and should be an ongoing conversation throughout a subject’s entire time in the study (8).

Investigational New Drug Application (IND) – the process through which an investigator requests the FDA to allow human testing of a new drug.

Institutional Review Board (IRB) – an independent group of professionals designated to review and approve the clinical protocol, informed consent forms, study advertisements, and patient brochures to ensure that the study is safe for human participation. It is also the IRB’s responsibility to ensure that the study adheres to the FDA’s regulations.

Minimal risk – the probability that harm or discomfort anticipated in the research study are not greater than those encountered in daily life or during routine physical examinations (2).

National Institutes of Health (NIH) – agency within DHHS that provides funding for research, conducts studies, and funds multi-site national studies.

Protected Health Information (PHI) – individually identifiable health information. HIPAA provides federal protections for personal health information and gives patients more control over their health information. It also sets boundaries for how entities and institutions can use and release health records (9).

Placebo – an inactive substance designed to resemble the drug being tested. It is used as a control to rule out any psychological effects testing may present. Most advanced clinical trials include a control group that is unknowingly taking a placebo.

Principal Investigator – the primary individual responsible for conducting a clinical trial and adhering to federal regulations, institutional policies, and IRB regulations (2).

Protocol – a detailed plan that sets out the objectives, study design, and methodology for a clinical trial. A study protocol must be approved by an IRB before research may begin on human subjects.

Randomization – study participants are assigned to groups in such a way that each participant has an equal chance of being assigned to each treatment or control group. Since randomization ensures that no specific criteria are used to assign any patients to a particular group, all the groups will be equally comparable.

Research – systematic investigation designed to develop or contribute to generalizable knowledge.

Standard treatment/Standard of care – the currently accepted treatment or intervention considered to be effective in the treatment of a specific disease or condition.

Statistical significance – the probability that an event or difference was occurred by chance alone. In clinical trials, the level of statistical significance depends on the number or participants studied and the observations made, as well as the magnitude of differences observed.

Subject/Participant – a patient or healthy individual participating in a research study.

Treatment arm/group – a group of study subjects who are treated with the investigational agent.

Visit schedule/Test schedule – the number, frequency, and type of exams, tests, and procedures that research subjects will be expected to undergo during the study. Some visits may be the same as normal clinical care visits, while others may be required just for the purpose of collecting data for the research study.

 

Definitions taken from https://www.centerwatch.com/health-resources/glossary/ unless otherwise cited.

(2) https://www.mayo.edu/research/institutional-review-board/definition-terms

(3) https://acrpnet.org/2018/08/14/the-anatomy-of-a-great-clinical-research-coordinator/

(4) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5977668/

(5) https://www.hhs.gov/hipaa/for-professionals/privacy/index.html

(6) https://www.hhs.gov/hipaa/for-professionals/special-topics/research/index.html

(7) https://methods.sagepub.com/Reference//encyclopedia-of-survey-research-methods/n472.xml

(8) https://oprs.usc.edu/files/2017/04/Informed-Consent-Booklet-4.4.13.pdf

(9) https://www.hhs.gov/hipaa/for-individuals/faq/187/what-does-the-hipaa-privacy-rule-do/index.html

 

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.

Mon, May 20 2:30pm · Demystifying Clinical Trials – Part 1 in HLHS

HLHS Mayo - heart puzzle

In honor of Clinical Trials day on May 20th, we’re kicking off a series that’s designed to shed some light on the world of clinical research. Follow us on Facebook, Twitter, and Instagram and stay tuned for posts over the coming months about commonly confusing terms, questions to ask before enrolling in a clinical trial, where to find research results, interviews with members of our research team about their roles, and more!

What is a clinical research trial?

A clinical research trial, also called a research study, is a process designed to test whether a new treatment or drug is safe and effective. There are strict regulations and guidelines, from both the Food & Drug Administration (FDA) and the institution conducting the research, which all researchers must follow to ensure that a trial is conducted safely and reliably.

Why is clinical research important?

As researchers learn more about science and health, they develop ideas, called hypotheses, about new treatments that might help people. However, before these new treatments can be used for everyone, they need to be tested.

The process to test a new drug or treatment starts by giving it to a small number of people and watching closely to make sure it’s safe. The next step is to give it to more people and compare them to people who didn’t get the new treatment. If a clinical trial shows that a new treatment is both safe and effective, researchers share their results publically so doctors know they can use the new treatment regularly.

Who conducts clinical research?

Most major hospitals and universities around the world participate in clinical trial research. Health care device and pharmaceutical companies also conduct trials. All researchers in the US must follow strict rules designed by the National Institutes of Health, FDA, and the institution conducting the research to make sure that participants are kept safe and that their data is kept confidential.

A research team composed of a lead investigator, several co-investigators, research coordinators, statisticians, and sometimes laboratory staff work together to conduct the trial. One of the ways patients are kept safe is by having the research teams follow clear guidelines for how the study will be conducted. In addition, having pre-determined criteria for which patients can enroll ensures everyone is healthy enough to participate.

When should I consider participating in research?

Most clinical trial research involves testing a new procedure or drug that’s intended to treat a specific medical condition. Some studies are observational and are only designed to naturally watch what happens to help researchers better understand a condition. Your doctor may discuss clinical trials that are available if you have been diagnosed with a specific disease or disorder and are healthy enough to participate.

You may also consider participating in a research study if you are healthy and want to help researchers compare data between healthy and unhealthy groups of people. Studies looking for healthy volunteers are often advertised around hospital and university campuses or online.

How is clinical research conducted?

Today’s clinical trials follow steps that are based on the Scientific Method that was developed in the 17th century.  Let’s walk through the process using a new cholesterol-lowering drug as an example.

Hypothesis – Dr. Jane Smith studied the results of other scientists, as well as her own previous research, and developed a theory about a new drug that might lower cholesterol.

Protocol – Dr. Smith writes a long, detailed plan called a protocol. This document explains why she thinks this drug will work better than the current ones, which people will be able to enroll in the study, exactly how and when data will be collected to test the drug, how the data will be measured, and how she will know for sure if it’s safe and effective.

Data Collection and Analysis – Dr. Smith and her research team tell patients with high cholesterol about the new drug and why it might be better than current ones. Those who are eligible and want to enroll are treated according to the plan in the protocol. The research team collects data on their health and outcomes, sometimes over several years, to ensure everyone is safe. Once the data has been collected, the team analyzes the results to see whether or not the drug lowered cholesterol better than the standard.

Publication – The research team then writes a brief paper (usually 6-10 pages) explaining the details of their hypothesis, how they conducted the study, and their results. Just like there are many magazines on a variety of specialized topics, there are many scientific journals that publish papers written by research teams. Dr. Smith would choose a journal related to the topic of their study and submit it for review. All reliable journals have what’s called a “peer-review process” in which experts in the field volunteer to review papers scientifically (both the research team and reviewers are anonymous). If a group of reviewers all agree that Dr. Smith’s study was conducted well and the results are valid, the paper will be published in the journal. Others in the field can then read about it and design similar studies to confirm or contradict Dr. Smith’s results.

Changing Clinical Practice – Once several studies have found that the new drug is safe and effective, doctors everywhere can start using it in regular clinical practice. This means that all patients can get it without needing to enroll on a clinical trial at a particular hospital. The point of clinical research is to continually find safer and more effective treatments for all patients.

Where can I find clinical trials and learn more?

Many local hospitals and universities also have information on their websites about available trials and who to contact.

 

 

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.

Fri, May 10 3:14pm · When a House becomes a Home: The Ronald McDonald House in HLHS

Mayo HLHS blog - RMH house

 

Many hypoplastic left heart syndrome (HLHS) and congenital heart defect families have experienced the love and support that overflow in Ronald McDonald Houses (RMH) around the world. With 368 houses in 64 countries, patients and families are thankful to call the House a home when medical care takes them away from their own1.

The first House opened in Philadelphia in 1974 after Kim Hill, daughter of Eagle’s player Fred Hill, was treated for leukemia2. After three years of sleeping on hospital chairs, eating out of vending machines, and meeting other families who couldn’t afford hotels, Fred and his wife Fran decided to find a better way. They enlisted the help of Eagle’s teammates, the team’s General Manager, the head of pediatric oncology at the Children’s Hospital of Philadelphia, and the local McDonald’s advertising agency to raise money. The Shamrock Shake was introduced locally as a promotion with funds going to purchase an old house near the hospital. Since then, over 10 million families have found comfort in RMHs around the world.

The rooms and services at all RMHs are offered todog families at no cost. Yet, the biggest reason families choose to stay is because of the community atmosphere and support they can share with other families who are experiencing similar challenges. (You can read stories from guests of the Rochester Minnesota RMH on their blog, or visit your local House’s website.)

All Houses offer home-cooked meals, private bedrooms, and playrooms for kids. Some also have suites for immune-compromised children, educational programs, recreational activities, and support services for siblings3.

The Todd and Karen Wanek Family Program for HLHS is grateful to our local RMH for their incredible support of patients and families at Mayo Clinic! The House has been undergoing a major expansion since May 2018, and we’re excited for the Grand Opening on May 17, 2019!  According to Jacob Dyer, Communications Director of the RMH of Rochester, MN:

“From 2013-2017, the House provided shelter to an average of 848 families per year…. The expansion increases the number of guests rooms from 42 to 70, making it the largest RMH in the state of Minnesota, the 11th largest in the United States, and 17th largest in the world based on number of guest rooms.”

 

house

Additionally, the new space will include an indoor activity play area, large outdoor backyard with playground, basketball hoop, and grills, adult spaces for meditation and physical activity, and underground parking – an amenity that’s much appreciated during Minnesota winters! The existing part of the House will undergo renovations over this summer to expand the Community Room and Craft Room, as well as add a food co-op/grocery area providing fresh and healthy foods.

The Houses in each community are supported by a tremendous network of volunteers. This creates a unique environment that reflects the local area and supports the needs of guests in each particular community. There are so many ways that individuals and groups can support their House! Financial donations are always needed, but volunteers give their time and energy to make the House a home for kids and families.

Many houses offer meals, activities, blankets, toys, or other gifts which are all provided by volunteers. Some make a Shopping List, Amazon, or Target Registry with specific items that are needed. Kids can even get involved by collecting pop tabs to raise money!

Find your local RMH chapter for more ways that you can help!

 

House-dinner1-1500x600

 

Special thanks to Jacob Dyer with our local RMH for providing information on the House and how volunteers can get involved.

  1. https://www.rmhc.org/our-impact
  2. http://rmhcofalbany.org/who-we-are/history
  3. https://www.rmhc.org/ronald-mcdonald-house

 

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.

 

Mon, Apr 15 2:50pm · 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.