Study Shows Importance of Ensuring Participant and Provider Follow-up After a Genetic Screening Result

Study Shows Importance of Ensuring Participant and Provider Follow-up After a Genetic Screening Result

Graphic representation of the DNA sequence

April 27, 2022
RENO, Nev.

Genetics
Genetics Screening
Actionable Care Plans
Above: Graphic representation of the DNA sequence. In a recent study, Healthy Nevada Project scientists looked at the impact that notifying a patient of a positive finding for a CDC Tier 1 condition had on the care that the patient received in the months and years that followed.
Credit: Gio_tto, “Graphic representation of the DNA sequence”, https://www.istockphoto.com/photo/dna-sequence-gm498188318-79526609.
Study Shows Importance of Ensuring Participant and Provider Follow-up After a Genetic Screening Result
New research from the Healthy Nevada Project® finds that a confirmed diagnosis does not always result in changes to patient care
front page of Incomplete Penetrance of Population-Based Genetic Screening Results in Electronic Health Record

The full text of the study,  Incomplete Penetrance of Population-Based Genetic Screening Results in Electronic Health Record, is available from Frontiers in Genetics: https://www.frontiersin.org/articles/10.3389/fgene.2022.866169/full?&utm_source=Email_to_authors_&utm_medium=Email&utm_content=T1_11.5e1_author&utm_campaign=Email_publication&field=&journalName=Frontiers_in_Genetics&id=866169.

Reno, Nev. (April 27, 2022)Presenting individuals with potentially life-altering health information doesn’t mean the individuals – or their healthcare providers – will act on it. Follow-up education and conversations about actionable care plans with patients and their doctors are key next steps, according to new research from the Healthy Nevada Project.  

The Healthy Nevada Project is a genetic screening and research project that launched in 2016 as a partnership between DRI and Renown Health. The project now has more than 50,000 participants, with genetic sequencing provided by Helix 

Between September 2018 and September 2020, the Healthy Nevada Project successfully notified 293 participants that they were genetically at risk for hereditary breast and ovarian cancer syndrome, Lynch syndrome, or familial hypercholesterolemia – three common genetic conditions known collectively as the Centers for Disease Control and Prevention (CDC) Tier 1 conditions. In a study published today in Frontiers in Genetics, Healthy Nevada Project scientists looked at the impact that notifying a patient of a positive finding for a CDC Tier 1 condition had on the care that the patient received in the months and years that followed.  

According to their results, among the 293 Healthy Nevada Project participants who were notified of their genetic risk of a CDC Tier 1 condition, 71 percent of participants with electronic health records shared their findings with healthcare providers. However, only 30 percent of the electronic health records for these patients contained documentation of the genetic diagnosis, and only 10 percent of examined patients experienced a possible change in care after receiving the results of their genetic screening.  

“The Healthy Nevada Project was implemented with a ‘hands-off’ approach where the participants receive their findings and decide with whom and when to share those findings. The findings were not automatically added to their electronic health records,” said Dr. Gai Elhanan, health data scientist at DRI and co-lead author of the study. “What we’re learning now is that to ensure that important genetic findings are integrated into the care journey it is important to make their inclusion into the electronic health records part of the study.” 

This study builds on previous Healthy Nevada Project research published in Nature Medicine demonstrating the importance of screening for CDC Tier 1 conditions, which affect about one in 75 individuals and can be mitigated or even prevented from developing into disease when detected early. This study found that as many as 90 percent of the CDC Tier 1 cases are missed by clinical providers during normal clinical care screenings and examinations. 

During the current study, the Healthy Nevada Project scientists found that 19 percent of studied participants had already developed one of the CDC Tier 1 conditions, and thus would have potentially benefited from earlier notification about their condition. The study team hopes that their findings will encourage individuals in Nevada to obtain genetic testing for these relatively common conditions. Even if individuals are older or have already suffered from diseases related to these conditions, testing could also prove beneficial to siblings, children, and grandchildren who may also be at risk and who could subsequently be screened in the event of a positive finding. 

The study team also encourages informing health care providers of the importance of incorporating genetic diagnoses into the pharmaceutical (for example, for Familial Hypercholesterolemia) and treatment advice given to patients.  

“As a result of this analysis, the clinicians at Renown Health and the Healthy Nevada Project researchers have made significant changes, including obtaining informed consent from participants to report positive findings from their genetics reports directly into their electronic medical record,” said Daniel Kiser, M.S., assistant research scientist of data science at DRI and co-lead author of the study. “This will help both participants, their clinical providers, and the whole state maximize the long-term benefits of the Healthy Nevada Project voluntary population-based genetic screening.”  

Additional information:

The full text of the study,  Incomplete Penetrance of Population-Based Genetic Screening Results in Electronic Health Record, is available from Frontiers in Genetics: https://www.frontiersin.org/articles/10.3389/fgene.2022.866169/full?&utm_source=Email_to_authors_&utm_medium=Email&utm_content=T1_11.5e1_author&utm_campaign=Email_publication&field=&journalName=Frontiers_in_Genetics&id=866169.  

This project was funded by Renown Health, the Renown Health Foundation, and the Nevada Governor’s Office of Economic Development. Study authors included Gai Elhanan (DRI), Daniel Kiser (DRI), Iva Neveux (DRI), Shaun Dabe (Renown Health), Alexander Bolze (Helix), William Metcalf (DRI), James Lu (Helix), and Joseph Grzymski (DRI/Renown Health).  

For more information on the Healthy Nevada Project® or to request genetic screening, please visit: https://healthynv.org/ 

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About DRI

The Desert Research Institute (DRI) is a recognized world leader in basic and applied environmental research. Committed to scientific excellence and integrity, DRI faculty, students who work alongside them, and staff have developed scientific knowledge and innovative technologies in research projects around the globe. Since 1959, DRI’s research has advanced scientific knowledge on topics ranging from humans’ impact on the environment to the environment’s impact on humans. DRI’s impactful science and inspiring solutions support Nevada’s diverse economy, provide science-based educational opportunities, and inform policymakers, business leaders, and community members. With campuses in Las Vegas and Reno, DRI serves as the non-profit research arm of the Nevada System of Higher Education. For more information, please visit www.dri.edu.

About Renown Health 

Renown Health is the region’s largest, locally governed, not-for-profit integrated healthcare network serving Nevada, Lake Tahoe and northeast California. With a diverse workforce of more than 7,000 employees, Renown has fostered a longstanding culture of excellence, determination and innovation. The organization comprises a trauma center, two acute care hospitals, a children’s hospital, a rehabilitation hospital, a medical group and urgent care network, and the region’s largest, locally owned not-for-profit insurance company, Hometown Health. Renown is currently enrolling participants in the world’s largest community-based genetic population health study, the Healthy Nevada Project®. For more information, visit renown.org.  

About Helix 

Helix is the leading population genomics and viral surveillance company operating at the intersection of clinical care, research, and data analytics. Helix enables health systems, life sciences companies, payers, and government partners to accelerate the integration of genomic data into patient care and public health decision making. Learn more at www.helix.com.   

Childhood trauma and genetics linked to increased obesity risk

Childhood trauma and genetics linked to increased obesity risk

HPN Renown and DRI Logos

March 9, 2022
RENO, NV

Childhood Trauma
Genetics
Obesity

Above: The logos for the Healthy Nevada Project, DRI, and Renown Health.

Credit: DRI.

Childhood trauma and genetics linked to increased obesity risk 
New study from the Healthy Nevada Project® shows strong influence of genes and environment on human health 
Front page screenshot of Healthy Nevada Project study

The full text of the study, The Impact of ACEs on BMI: An Investigation of the Genotype-Environment Effects of BMI, is available from Frontiers in Genetics: https://www.frontiersin.org/articles/10.3389/fgene.2022.816660/full

Reno, Nev. (March 9, 2022)New research from the Healthy Nevada Project® found associations between genetics, obesity, and childhood trauma, linking social health determinants, genetics, and disease. The study, which was published this week in Frontiers in Genetics, found that participants with specific genetic traits and who experience childhood traumas are more likely to suffer from adult obesity.  

In 2016, DRI and Renown Health launched the Healthy Nevada Project®, the nation’s first community-based, population health study, which now has more than 60,000 participants. The project is a collaboration with personal genomics company, Helix, and combines genetic, environmental, social, and clinical data to address individual and community health needs with the goal of improving health across the state and the nation.  

The new study focuses on Adverse Childhood Experiences (ACEs), which are traumatic and unsafe events that children endure by the age of 18. Over 16,000 participants in the Healthy Nevada Project® answered a mental health survey, and more than 65 percent of these individuals self-reported at least one ACE occurrence. These 16,000 participants were cross-referenced with their genetic makeup, and clinical Body Mass Index (BMI) measures.  

According to the research team’s findings, study participants who had experienced one or more types of ACE were 1.5 times more likely to become obese adults. Participants who experienced four or more ACEs were more than twice as likely to become severely obese.    

“Our analysis showed a steady increase in BMI for each ACE a person experienced, which indicates a very strong and significant association between the number of adverse childhood experiences and adult obesity,” said lead author Karen Schlauch, Ph.D., of DRI. “More importantly, participants’ BMI reacted even more strongly to the occurrence of ACEs when paired with certain mutations in several genes, one of which is strongly associated with schizophrenia.” 

“We know that genetics affect disease in the Healthy Nevada Project® [https://pubmed.ncbi.nlm.nih.gov/31888951/], and now we are recognizing that ACEs also affect disease,” said Healthy Nevada Project® Principal Investigator Joseph Grzymski, Ph.D., of DRI and Renown Health. “Our new study shows that the combination of genes and environmental factors like ACEs, as well as many social determinants of health, can lead to more serious health outcomes than either variable alone. More broadly, this new work emphasizes how important it is for population genetic studies to consider the impact of social determinants on health outcomes.” 

The study team believes that it is important for clinical caregivers to understand the strong impact that negative childhood experiences such as ACEs can have on both child and adult health. The researchers hope the information from this study will encourage doctors and nurses to conduct simple screenings for ACEs and consider a patient’s social environment and history in combination with genetics when developing treatment plans for better patient health. 

According to the 2019 Youth Behavior Risk Survey (YRBS), 25.6 percent of Washoe County teenagers are overweight or obese. Obesity is a serious health concern for children and adolescents. According to the Centers for Disease Control and Prevention, obese children and adolescents are more likely to become obese as adults.   

“Obese and overweight children and adolescents are at risk for multiple health problems during their youth, which are likely to be more severe as adults,” said Max J. Coppes, MD, PhD, MBA, FAAP, Nell J Redfield Chair of Pediatrics at the University of Nevada Reno School of Medicine, Physician in Chief of Renown Children’s Hospital. “Obese and overweight youth are more likely to have risk factors associated with cardiovascular diseases, such as high blood pressure, high cholesterol, and type 2 diabetes. Losing weight, in addition to a healthy diet, helps to prevent and control multiple chronic diseases and improves quality of life for a lifetime.”  

“We’d like to thank all of the Healthy Nevada Project® participants who provided information to make our work possible,” said Robert Read, M.S., of DRI. “Our research illustrates that it’s not just genetics that cause disease, but that our environment and life experiences interact with our genes to impact our health in ways that we are only beginning to understand.” 

Many thanks to Renown Health, the Stacie Mathewson Behavioral Health and Addiction Institute, and the Center for Genomic Medicine at DRI for supporting this significant work. Renown is currently enrolling participants in the world’s largest community-based genetic population health study, the Healthy Nevada Project®. For more information, visit renown.org. 

More information: 

The full text of the study, The Impact of ACEs on BMI: An Investigation of the Genotype-Environment Effects of BMI, is available from Frontiers in Genetics: https://www.frontiersin.org/articles/10.3389/fgene.2022.816660/full 

This project was funded by the Stacie Mathewson Behavioral Health and Addiction Institute, Renown Health, and the Renown Health Foundation. Study authors included Karen Schlauch (DRI), Robert Read (DRI), Iva Neveux (DRI), Bruce Lipp (DRI), Anthony Slonim (Renown Health), and Joseph Grzymski (DRI/Renown Health). 

For more information on the Healthy Nevada Project®, please visit: https://healthynv.org/ 

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About DRI

The Desert Research Institute (DRI) is a recognized world leader in basic and applied environmental research. Committed to scientific excellence and integrity, DRI faculty, students who work alongside them, and staff have developed scientific knowledge and innovative technologies in research projects around the globe. Since 1959, DRI’s research has advanced scientific knowledge on topics ranging from humans’ impact on the environment to the environment’s impact on humans. DRI’s impactful science and inspiring solutions support Nevada’s diverse economy, provide science-based educational opportunities, and inform policymakers, business leaders, and community members. With campuses in Las Vegas and Reno, DRI serves as the non-profit research arm of the Nevada System of Higher Education. For more information, please visit www.dri.edu.

About Renown 

Renown Health is the region’s largest, locally governed, not-for-profit integrated healthcare network serving Nevada, Lake Tahoe and northeast California. With a diverse workforce of more than 7,000 employees, Renown has fostered a longstanding culture of excellence, determination and innovation. The organization comprises a trauma center, two acute care hospitals, a children’s hospital, a rehabilitation hospital, a medical group and urgent care network, and the region’s largest, locally owned not-for-profit insurance company, Hometown Health. Renown is currently enrolling participants in the world’s largest community-based genetic population health study, the Healthy Nevada Project®. For more information, visit renown.org. 

Media contacts: 

Kelsey Fitzgerald, DRI
Senior Communications Official
775-741-0496
Kelsey.fitzgerald@dri.edu 

Renown Public Relations
775-691-7308
news@renown.org 

Meet Gai Elhanan, M.D.

Meet Gai Elhanan, M.D.

Gai Elhanan, M.D., is a health data scientist with the Division of Earth and Ecosystems Sciences at the Desert Research Institute in Reno. He specializes in health care informatics, and is a physician with more than 12 years of experience in internal medicine and infectious diseases. Gai received his M.D from Tel Aviv University and his M.A in Medical Informatics from Columbia University. He also completed a NIH post-doctoral fellowship at the Medical Informatics Department, New York Presbyterian Medical Center/Columbia University. In his free time, Gai enjoys listening to jazz and classical music, flying radio-controlled airplanes, and doing woodwork.


What do you do here at DRI?

I came to DRI in 2017 to work with the Healthy Nevada Project. I am a physician by training, so, I am the guy within the Healthy Nevada Project that gives the clinical perspective on the data and questions. I provide the viewpoint of a health professional, whereas the other people on the team are geneticists, data scientists, or have backgrounds in other scientific fields. We sometimes collaborate with the physicians at Renown, cardiologists or other specialists, but they are very busy taking care of their many patients; we can’t really utilize them to the extent we would like. So, that is exactly where I come in. It might not be that I am the most up-to-date in every field of medicine, but I bring the clinical perspectives and medical knowledge to the team.

One of your specialties is in health care informatics. Can you tell us a little bit about this field of study?

Yes, I’ve been involved with health informatics for 20-something years now. Basically, it’s a very broad field that investigates how data can be used to improve health care. In health care, we have vast amounts of data, and we don’t use it optimally. When you visit a doctor, everything is coded – your diagnosis, procedures, medical services. These codes are mostly used for billing purposes, but we can also extract clinical information for research. For example, We can utilize the genomic information we collect from the HNP participants and correlate it to clinical findings and diagnoses in the electronic medical records to try and predict risk and factors that are associated with outcomes of certain conditions.

In health care informatics, we look at how data should be presented for research or patients or clinicians, and how to draw conclusions from the data. By improving the utilization of the data within the electronic health record, we improve the quality and efficiency of the care provided, we improve the ability to do research on the data and, overall we improve the health of the population. How to get the right data, how to organize it, and how to present it optimally for each task are all very important things.

What are you working on right now with the Healthy Nevada Project?

Right now, with the Healthy Nevada Project, we’re trying to improve participation for specific groups of individuals. Originally the Healthy Nevada Project was testing whoever walked in, they were encouraged to provide their saliva and join the project. But now, for several reasons, we’re also trying to improve targeted recruiting in order to better represent the actual population of the region. So, we’re trying to identify who might be good potential participant for the project, and work with Renown’s research coordinators and ambassadors for the project to reach out to people who we would like to have participate.

I am also working on a project with Gilead, the pharmaceutical company, concerning a condition called NASH (non-alcoholic steatohepatitis). NASH affects a significant portion of the population here in Northern Nevada, and can result in life threatening outcomes. This is a strategic collaboration to collect and analyze genetic and electronic health data that can enhance the understanding of NASH and potentially inform development of treatment options for the disease.

How did you end up here at DRI?

I did my medical training in Israel, and also did my residency there. We ended up in the U.S. because my wife is originally from the States. She is a physician as well, a pediatrician and an adolescent medicine specialist. I decided that I didn’t want to practice medicine in the U.S., I wanted to do something else. So, in 1995, I got a NIH grant to do a postdoc fellowship at Columbia University in New York. I got a master’s degree there in medical informatics. We came to Reno a few years ago when my wife was offered a position at Renown, and that’s when I started at DRI with the Healthy Nevada Project. Her position didn’t work out and she went back to New York, but I like the potential in the Healthy Nevada Project and the group of people I’m working with so I stayed with the DRI team to keep doing my work.  The team here is a really nice group of people.


To learn more about the Healthy Nevada Project, please visit: https://www.dri.edu/project/healthy-nevada-project/

To learn more about Gai’s work with the Renown Institute of Health Innovation (Renown IHI), please visit: https://www.dri.edu/renown-ihi/ 

 

Population health study “Healthy Nevada Project” goes statewide, adding 25,000 participants

Las Vegas, Nev. (May 8, 2019) – The Healthy Nevada Project, a first-of-its-kind, community-based population health study combining genetic, clinical, environmental and social data, is expanding enrollment to Las Vegas. The Project aspires not only to offer genetic testing to every Nevadan interested in learning more about their health and genetic profile but ultimately, to develop and expand the Project for communities across the United States to drive positive health outcomes nationwide.

Adding 25,000 Study Volunteers in Southern Nevada

The Healthy Nevada Project is announcing a statewide expansion – opening 25,000 testing slots in Las Vegas in a collaboration with University Medical Center of Southern Nevada (UMC), which serves as the host-site for Las Vegas.

With UMC welcoming the study to southern Nevada, the Healthy Nevada Project will offer no-cost genetic testing through a simple spit sample to 25,000 study volunteers. Study volunteers will take Helix’s clinical-grade DNA saliva test and will receive their ancestry and traits, at no cost, through the My Healthy Nevada Traits app. Participants will then be given a chance to answer a follow-up health survey from Renown Institute for Health Innovation (Renown IHI), and upon survey completion, will be entered to win an iPhone.

In addition, study participants can agree to be notified about genetic test results that could impact their health, and which could be used to improve their medical care. This return of clinical results, plus genetic counseling and other genetic services as appropriate, will be provided by Genome Medical, the leading network of clinical genetics specialists.

“This is an incredible opportunity to learn more about our genetics and improve health throughout the Silver State,” said Mason VanHouweling, CEO of UMC. “In support of UMC’s commitment to promoting innovation in health care and building a better future for our home state, we embrace the opportunity to collaborate with Renown Health while hosting the Healthy Nevada Project in southern Nevada.”

Healthy Nevada Project’s Evolution & Ongoing Expansion

With more than 35,000 study participants enrolled in just over two years, the Healthy Nevada Project has become the fastest-enrolling genetic study in the country. The Project was created by Renown IHI – a collaboration between Reno, Nev.-based not-for-profit health network, Renown Health, and the world leader in environmental data, Desert Research Institute (DRI). Leveraging Renown’s forward-thinking approach to community health care and DRI’s data analytics and environmental expertise, Renown IHI has grown its capabilities to lead a larger, more complex research study of significance that will analyze and model public health risks in Nevada and serve as a national model for future population health studies working to improve overall health through clinical care integration.

During the Project’s pilot launch in September 2016, more than 10,000 community members signed up for DNA testing in just 48 hours. In March 2018, phase two offered full genomic sequencing through a simple spit test from partner, Helix, to northern Nevadans. In October 2018, the Project announced the return of clinical results for study participants, notifying them of their risk for CDC Tier 1 conditions including familial hypercholesterolemia, BRCA positive 1 and 2, and Lynch syndrome, a precursor to colon cancer.  These conditions affect more than one percent of the population and are inherited so they impact family members as well. Now, the Project announced its next phase – expanding enrollment to 25,000 people in southern Nevada through a collaboration with UMC.

Serving as a National Model

This expansion to Las Vegas truly makes this the “Healthy Nevada Project” with a statewide impact making Nevada the only state in the U.S. to offer such a program.

“Nevada was ripe to advance population health goals because, sadly, our state ranks near the bottom in health outcomes. The Healthy Nevada Project is working to change that,” said Anthony Slonim, M.D., DrPH, FACHE, president and CEO of Renown Health and president of Renown IHI. “Our researchers are working on a number of clinical programs and scientific studies to determine why in Washoe County, the county in which Renown Health is located, Nevada’s age-adjusted death rates for heart disease, cancer and chronic lower respiratory disease are 33 percent higher than the national rate. Imagine if we can gather more data like this on a national scale and use it to change the future of health and health care? That is what the Healthy USA Project is looking to do in the years to come.”

“The Healthy Nevada Project is committed to providing study participants clinically actionable data that will help improve their health,” said Joseph Grzymski, Ph.D., associate research professor at DRI, principal investigator of the Healthy Nevada Project and chief scientific officer for Renown Health. “We are providing this information at the individual level so study volunteers can make lifesaving changes to reduce their risk. We’re also doing it on the community level to develop leading-edge research on health determinants for entire neighborhoods, states and eventually, the country.”

Expanding to Become the Healthy USA Project

The accelerated speed of the Project is made possible thanks to the ever-decreasing cost of sequencing. Today, Helix is able to sequence an entire exome – which allows reporting on most actionable genomic knowledge – for a fraction of what it would have cost just 10 years ago. Additionally, advances in digital health mean Helix and Project researchers can capture unprecedented amounts of health data digitally, making significant contributions to advancing precision health. The partnership has managed to remove the traditional barriers of population health studies, including the difficulty in recruiting participants, establishing quality high-throughput lab systems, and scaling interpretation and return of results. This development will be key as other health systems around the country join the Project.

“We are thrilled to see the constant, fast-paced evolution of this Project with Renown IHI,” said Justin Kao, Co-Founder of Helix. “In less than a year, we have sequenced the DNA of thousands of study participants and are now preparing to offer this incredible study in other states. Combining environmental, clinical, social and genetic data allows us to discover risk factors within communities and help people take action to live longer, healthier lives. That’s what makes the next step of the Healthy USA Project so exciting for all of us.”

Northern and southern Nevadans over age 18 who are interested in taking part are encouraged to learn more and sign up for the study at HealthyNV.org.

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About UMC

UMC offers the highest level of care in Nevada, providing a wide range of exclusive and specialized health care services to community members and visitors. UMC is home to Nevada’s only Level I Trauma Center, only Designated Pediatric Trauma Center, only Burn Care Center and only Center for Transplantation. Children’s Hospital of Nevada at UMC serves as the state’s only hospital to be recognized and accepted as an associate member of the Children’s Hospital Association. Offering highly skilled physicians, nurses and staff members supported by the latest, cutting-edge technology, UMC and Children’s Hospital of Nevada continue to build upon their shared reputation for providing Nevada’s highest level of care. In support of its mission to serve as the premier academic health center, UMC is the anchor partner for the UNLV School of Medicine. For more information, please visit www.umcsn.com and www.chnv.org.

Renown Institute for Health Innovation is a collaboration between Renown Health – a locally governed and locally owned, not-for-profit integrated healthcare network serving Nevada, Lake Tahoe and northeast California; and the Desert Research Institute – a recognized world leader in investigating the effects of natural and human-induced environmental change and advancing technologies aimed at assessing a changing planet. Renown IHI research teams are focused on integrating personal healthcare and environmental data with socioeconomic determinants to help Nevada address some of its most complex environmental health problems; while simultaneously expanding the state’s access to leading-edge clinical trials and fostering new connections with biotechnology and pharmaceutical companies. Learn more at https://healthynv.org/.

Helix is a genomics company with a simple but powerful mission: to empower every person to improve their life through DNA. Our affordable, turnkey population health solution enables institutions to quickly scale projects that engage communities and accelerate research and discovery, ultimately allowing every person to benefit from the power of genomics. We’ve also created the first marketplace for DNA-powered products where people can explore diverse and uniquely personalized products developed by high-quality partners, providing powerful tools to increase engagement and speed the pace of population-scale genomics. Helix is headquartered in the San Francisco Bay Area, has an office in Denver, Colorado and operates a CLIA-certified and CAP-accredited next-generation sequencing lab in San Diego powered by Illumina (NASDAQ: ILMN) NGS technology. Helix was created in 2015. Learn more at www.helix.com.

Helix, the Helix logo and Exome+ are trademarks of Helix Opco, LLC. All other trademarks referenced herein are the property of their respective owners.

Healthy Nevada Project announces pilot study insights and phase two enrollment

Reno, Nev. (March 15, 2018) – Eighteen months ago, northern Nevada made history welcoming a first-of-its-kind, community-based population health study combining clinical, genetic and environmental data with the goal of providing personalized, precision medicine for individuals while improving health statewide.

The Healthy Nevada Project is making history again with the opening of phase two genomic sequencing to an additional 40,000 northern Nevadans, bringing the study’s total participation to 50,000 residents and making it one of the largest population health studies in the country. Project leaders are also sharing insights from the 10,000-person pilot study and announcing lessons learned, which are now being integrated directly into patient care.

When healthcare network Renown Health and the world leader in environmental sciences, the Desert Research Institute (DRI), partnered to launch this landmark project in September 2016, the response was unprecedented with 10,000 community members signing up in just 48 hours and DNA sample collection completed in 69 working days.

Today, research teams with Renown Institute for Health Innovation (Renown IHI) – a collaboration between Renown and DRI – announced the first findings from that 10,000-person pilot. Study researchers explained how care providers and scientists will begin working on a number of clinical programs and scientific studies focused specifically on Washoe County’s high age-adjusted death rates for heart disease, cancer and chronic lower respiratory disease. Collectively, these conditions among local residents stand at 33 percent above the national rate.

In the coming months, Renown IHI will begin providing advanced calcium score screenings to pilot phase participants at higher risk for cardiovascular disease. This will allow researchers to examine the link between genetics and calcium buildup in the heart. Additionally, based on pilot phase data, researchers have seen increased use of regional healthcare correlated with fluctuations in air quality and so-called “bad air events” such as wildfires and atmospheric inversions. In phase two, Renown IHI will evaluate possible links between genetics and increased susceptibility to respiratory ailments.

“From the start, this project has been focused on improving health statewide. We are now not only seeing those results, but also acting on them,” said Anthony Slonim, M.D., DrPH, FACHE, president and CEO of Renown Health and president of Renown IHI. “Healthcare organizations around the country are moving from solely providing care inside hospital walls to improving health outcomes across communities. It starts with health literacy, and this is the largest health literacy project in the country. We are helping people understand their risks and getting involved at the clinical level to help them live healthier lives.”

Leveraging Renown’s forward-thinking approach to community healthcare and DRI’s data and environmental expertise, Renown IHI has evolved and grown its capabilities to lead a larger, more complex research study of significance that will analyze and model public health risks in the Silver State and serve as a model for future population health studies across the country.

“Nevada is leading the country in growth and innovation. But sadly, we continue to rank among the worst in regards to health at 47th in the nation,” said Nevada Gov. Brian Sandoval, the pilot study’s first participant. “Through the Healthy Nevada Project, we now have the gift of insight to make needed changes not just for ourselves and our loved ones, but for Nevada.”

For the second phase of this monumental project, research teams will have greater depth and quality of DNA data thanks to a partnership with Helix, a personal genomics company that uses Next Generation Sequencing (NGS) technology instead of genotyping and operates one of the world’s largest CAP- and CLIA-accredited exome sequencing labs. The Helix.com marketplace model will also enable the Healthy Nevada Project to work with other research groups and industry-leading companies at the forefront of using genetics to drive better health outcomes.

“Taken individually, environmental, genetic and clinical data are each powerful tools for advancing health. But a comprehensive picture of these data can be even more powerful – finding new risk factors within populations and further improving community health,” said James Lu, M.D., Ph.D., co-founder and senior vice president of Applied Genomics at Helix. “Each person who chooses to participate in the Healthy Nevada Project will be contributing their genetics to better scientific understanding and ultimately, helping everyone live longer, healthier lives.”

In phase two, an additional 40,000 Nevadans are invited to test using Helix’s proprietary NGS pipeline. Helix’s Exome+ assay testing reads all 20,000 protein-coding genes and other regions in the body important to providing genetic insights which allows for 100 times more data.

Study volunteers will take Helix’s DNA saliva test and automatically receive access to the popular Helix-powered ancestry app, Geno 2.0 by National Geographic, and a Helix.com account that lets them explore additional DNA-powered products on the Helix App store. If study participants choose to complete a follow-up survey from the Healthy Nevada Project, they will have the chance to pick an additional health and wellness app specific to their individual genetic results.

Renown IHI is opening 10,000 testing slots to any northern Nevadan interested in taking part. Once those 10,000 slots are filled, researchers will focus on matching the demographics that comprise northern Nevada. This means study participants will be eligible based on specific demographic variables including: gender, age group, ethnicity and rural versus urban residents.

“Fitting these criteria will ensure this landmark population health study mirrors the people of northern Nevada,” said Joseph Grzymski, Ph.D., senior director of the DRI Applied Innovation Center; co-director of Renown IHI; and principal investigator of the Healthy Nevada Project. “Thanks to years of research, we know gender, age and ethnicity all play key roles in a person’s health risks. By accurately representing our region, we will be able to better understand the health issues we’re seeing communitywide and how to address them.”

In the years ahead, Renown IHI aspires to offer genetic testing through the Healthy Nevada Project to every Nevadan interested in learning more about their health and genetic profile, and ultimately, drive positive health outcomes statewide. Simultaneously, the Healthy Nevada Project will expand the state’s access to leading-edge clinical trials and foster new connections with biotechnology and pharmaceutical companies.

To see if you are eligible to participate in the study, to sign up for study updates and for full details on the Healthy Nevada Project, please visit HealthyNV.org.

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Renown Institute for Health Innovation is a collaboration between Renown Health – a locally governed and locally owned, not-for-profit integrated healthcare network serving Nevada, Lake Tahoe and northeast California; and the Desert Research Institute – a recognized world leader in investigating the effects of natural and human-induced environmental change and advancing technologies aimed at assessing a changing planet. Renown IHI research teams are focused on integrating personal healthcare and environmental data with socioeconomic determinants to help Nevada address some of its most complex environmental health problems; while simultaneously expanding the state’s access to leading-edge clinical trials and fostering new connections with biotechnology and pharmaceutical companies. Learn more at www.healthynv.org.

Helix is a personal genomics company with a simple but powerful mission: to empower every person to improve their life through DNA. We’ve created the first marketplace for DNA-powered products where people can explore diverse and uniquely personalized products developed by high-quality partners. Helix handles sample collection, DNA sequencing, and secure data storage so that our partners can integrate DNA insights into products across a range of categories, including ancestry, entertainment, family, fitness, health and nutrition. Helix is headquartered in the San Francisco Bay Area and operates a CLIA-and-CAP-accredited Next Generation Sequencing lab in San Diego, powered by Illumina (NASDAQ:ILMN) NGS technology. Helix was founded in 2015 with support from Illumina, its largest shareholder. Learn more at www.helix.com.

Helix to help expand Healthy Nevada Project

Reno, Nev. and San Carlos, Calif. (Tuesday, January 9, 2018) – Fifteen months after launching the state’s landmark Healthy Nevada Project, Renown Institute for Health Innovation (Renown IHI) is taking steps toward significantly expanding public enrollment in its community-based population health initiative. Today, executives and research team members proudly announce they have partnered with personal genomics company, Helix, for the next phase of this study.

Utilizing Helix’s proprietary Next Generation Sequencing (NGS) technology and uniquely personalized suite of DNA-powered products, research teams at Renown Health and the Desert Research Institute (DRI) plan to offer an additional 40,000 Nevadans the opportunity to have their DNA sequenced and participate in phase two of the Renown IHI study expected to open for enrollment in spring 2018.

“From the beginning, our focus with the Healthy Nevada Project has been on delivering personalized health data to our communities that will ultimately drive positive change for our state,” said Anthony Slonim, M.D., DrPH, president and CEO of Renown Health, and president Renown IHI. “We are very excited about the opportunities the next phase of this groundbreaking study will offer. Community participants will be able to gain deeper, actionable insights into their DNA data, while our research teams gain unprecedented access to the largest clinical DNA sequencing facility in the world.”

Unlike other companies that use microarray technology, Helix uses NGS to sequence a proprietary assay called Exome+ that provides 100 times more data than was previously available. Exome+ includes all 22,000 protein-coding genes as well as additional regions known to be of interest. Helix sequences each participant’s DNA sample once, and then securely stores that information so the user can choose to explore many DNA-powered applications throughout their lifetime. All samples are processed in Helix’s CLIA- and CAP-accredited sequencing lab powered by Illumina (NASDAQ:ILMN) NGS technology, using the Exome+ assay.

“Our mission is to empower every person to improve their life through DNA. We invested heavily in our Exome+ assay, partner infrastructure, and CLIA- and CAP-accredited laboratory – which is now the largest clinical exome sequencing facility in the world – with the vision of empowering individuals with access to data about themselves and the DNA-powered products that enable them to take a more active role in their health,” said Robin Thurston, CEO of Helix. “Helix is proud to support this important project which will empower people to make better health choices and will contribute to novel genomics discoveries.”

The Healthy Nevada Project offers community members the opportunity to receive a product through Helix.com, at no cost, by volunteering for research. The Healthy Nevada Project will offer study participants a DNA kit from Helix that provides information on personal traits or ancestry, and a Helix.com account which will enable them to explore additional DNA-powered products through the Helix App store if they choose.

Researchers and data scientists leading the Healthy Nevada Project are combining genetic data with health and population data, as well as information from environmental databases to create a large health determinants data set. This health determinants platform is being used to identify and model public health risks ranging from disease and illness to the effects of environmental factors such as air quality on the health of Nevadans. The pilot phase of the study enrolled 10,000 participants in less than 48 hours and then completed subsequent DNA sample collection from each participant in just 60 working days. Participants in the pilot phase of the study range from ages 18-90 years old from 135 zip codes in northern Nevada. Socioeconomic survey information was also collected during the pilot phase using an advanced, confidential online survey tool.

Northern Nevada’s diverse healthcare catchment spans 100,000 square miles, an area the same size as New York, New Jersey, and Pennsylvania combined; and serves almost 1 million community members. These unique elements – the population, the comprehensive provider network offered by Renown Health, generational healthcare data and innovative combination of new research tools – make the region an ideal location for advanced health science.

“Our pilot phase used genotyping, which was a great start, but moving to exome sequencing and inviting an additional 40,000 people to participate will dramatically accelerate what we can learn about the human genome and has the potential to greatly improve preventative health and create incredible potential for new scientific discoveries,” said Joseph Grzymski, Ph.D., an associate research professor at DRI, co-director of Renown IHI, and principal investigator of the Healthy Nevada Project.

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Renown Institute for Health Innovation is a collaboration between Renown Health– a locally governed and locally owned, not-for-profit integrated healthcare network serving Nevada, Lake Tahoe and northeast California; and the Desert Research Institute – a recognized world leader in investigating the effects of natural and human-induced environmental change and advancing technologies aimed at assessing a changing planet. Renown IHI research teams are focused on integrating personal healthcare and environmental data with socioeconomic determinants to help Nevada address some of its most complex environmental health problems; while simultaneously expanding the state’s access to leading-edge clinical trials and fostering new connections with biotechnology and pharmaceutical companies. Learn more at www.healthynv.org.

Helix is a personal genomics company with a simple but powerful mission: to empower every person to improve their life through DNA. We’ve created the first marketplace for DNA-powered products where people can explore diverse and uniquely personalized products developed by high-quality partners. Helix handles sample collection, DNA sequencing, and secure data storage so that our partners can integrate DNA insights into products across a range of categories, including ancestry, entertainment, family, fitness, health and nutrition. From profound insights to just-for-fun discoveries, Helix is here to help people live a fuller life. Helix is headquartered in the San Francisco Bay Area, and has a CLIA- and CAP-accredited Next Generation Sequencing lab in San Diego powered by Illumina (NASDAQ:ILMN) NGS technology. Helix was created in 2015 with founding support from Illumina, its largest shareholder. Learn more at www.helix.com.