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Children's Hospital of Philadelphia and St. Jude Researchers Find Genetic Ancestry Influences How Gene Mutations Impact Cancer Prognosis in Patients With T-cell Acute Lymphoblastic Leukemia
Children's Hospital of Philadelphia and St. Jude Researchers Find Genetic Ancestry Influences How Gene Mutations Impact Cancer Prognosis in Patients With T-cell Acute Lymphoblastic Leukemia

Associated Press

time24-06-2025

  • Health
  • Associated Press

Children's Hospital of Philadelphia and St. Jude Researchers Find Genetic Ancestry Influences How Gene Mutations Impact Cancer Prognosis in Patients With T-cell Acute Lymphoblastic Leukemia

Study is the first to explore the impact of genetic ancestry on tumor genomics in T-ALL PHILADELPHIA and MEMPHIS, Tenn., June 24, 2025 /PRNewswire/ -- Investigators at Children's Hospital of Philadelphia (CHOP), St. Jude Children's Research Hospital (St. Jude), Dana Farber Cancer Institute (DFCI), and the Children's Oncology Group (COG), unveiled for the first time that changes in certain genes affect an aggressive cancer, T-cell acute lymphoblastic leukemia (T-ALL), differently depending on genetic ancestry. The collaborative study, published recently in the journal Blood Cancer Discovery, further reinforces the critical role of personalized medicine in advancing the treatment of pediatric cancers such as T-ALL. Most children in the U.S. newly diagnosed with cancer are treated through clinical trials or with regimens established by earlier trial findings. Increasingly, these frontline trials use prognostic biomarkers to guide treatments related to whether patients have high risk or low risk disease. While previous studies found that genetic ancestry affects how certain gene changes appear in cancer, researchers can now show that these gene changes may also predict outcomes differently depending upon an individual's ancestry. 'Our research demonstrates it is essential to ensure the equitable implementation of genomic biomarkers in treatment decisions or we may introduce disparities,' said David T. Teachey, MD, a lead study author at CHOP and Chair of the Acute Lymphoblastic Leukemia Disease Committee in the COG. 'Without this critical step, we risk misclassifying patients into the incorrect high- or low-risk groups, potentially causing undertreatment and increased risk of relapse, or overtreatment and unnecessary side effects, especially in populations of non-European descent.' Study participants were enrolled in the COG's multicenter phase 3 randomized clinical trial AALL0434 (NCT04408005) conducted from 2007 to 2014. Of the eligible participants evaluable with T-ALL, researchers analyzed complete sequencing for 1,309 individuals included in this study. They found that 80% had mutations in genes where prognostic impact varied depending on their genetic ancestry. For example, a gene called NOTCH1 was linked to better survival in patients of European ancestry but was not associated with better survival in patients of African ancestry. Importantly, this collaborative study brought together experts in the diagnosis and treatment of T-ALL, leukemia genomics, genetic ancestry and social determinants of health research, including study co-author Kira Bona, MD, MPH from DFCI. 'The study provides another important example of the way in which heritable and tumor-acquired genetic variations interact to determine the features and behavior of leukemia,' said study author Charles Mullighan, MBBS (Hons), MSc, MD, Senior Deputy Director of the St. Jude Comprehensive Cancer Center. The study evaluated tools that group patients into risk categories. One method worked well for everyone, no matter their ancestry. But another tool used, developed mainly from European data, sometimes gave misleading results for people from backgrounds other than European ancestry. The researchers also emphasized that certain genetic ancestries may be associated with more aggressive disease forms or different responses to treatment. 'Our groups have a long-standing interest in how genetic ancestry affects cancer biology in children. This study is another example of the fruitful collaboration with COG that led to the discovery of new genetic basis of racial/ethnic differences in leukemia,' said co-corresponding author Jun J. Yang, PhD, Endowed Chair in Pharmacogenomics of the St. Jude Department of Pharmacy and Pharmaceutical Sciences. 'The lessons learned from this work should be investigated in other types of cancer in children and adults to improve outcomes for patients of all ancestral backgrounds,' said first author Haley M. Newman, MD, a junior faculty member at CHOP. The research was supported by K12CA076931-24, Gabriella Miller Kids First (X01HD100702), R03CA256550, Alex's Lemonade Stand Foundation, the Leukemia and Lymphoma Society, Singapore NMRC, Singapore NUHS NCSP, Hyundai Hope on Wheels, (R01CA193776),(U10CA180886), (R01CA264837), (U24CA114766), (U24CA196173), (U10CA180899, Research Foundation, Pennsylvania Department of Health, the Harrison Willing Memorial Research Fund, The Invisible Prince Foundation, the Aiden Everett Davies Innovation Fund, ALSAC the fundraising and awareness organization of St. Jude, The St. Jude Chromatin Collaborative, (P30CA021765), (R35CA197695), (U54CA243124) and the Canadian Institute for Health Research. Newman et al. 'Impact of Genetic Ancestry on Genomics and Survival Outcomes in T-cell Acute Lymphoblastic Leukemia.' Blood Cancer Discov. Online May 28, 2025. DOI: 10.1158/ About Children's Hospital of Philadelphia: A non-profit, charitable organization, Children's Hospital of Philadelphia was founded in 1855 as the nation's first pediatric hospital. Through its long-standing commitment to providing exceptional patient care, training new generations of pediatric healthcare professionals, and pioneering major research initiatives, the hospital has fostered many discoveries that have benefited children worldwide. Its pediatric research program is among the largest in the country. The institution has a well-established history of providing advanced pediatric care close to home through its CHOP Care Network, which includes more than 50 primary care practices, specialty care and surgical centers, urgent care centers, and community hospital alliances throughout Pennsylvania and New Jersey. CHOP also operates the Middleman Family Pavilion and its dedicated pediatric emergency department in King of Prussia, the Behavioral Health and Crisis Center (including a 24/7 Crisis Response Center) and the Center for Advanced Behavioral Healthcare, a mental health outpatient facility. Its unique family-centered care and public service programs have brought Children's Hospital of Philadelphia recognition as a leading advocate for children and adolescents. For more information, visit About St. Jude Children's Research Hospital St. Jude Children's Research Hospital is leading the way the world understands, treats and cures childhood cancer, sickle cell disease and other life-threatening disorders. It is the only National Cancer Institute-designated Comprehensive Cancer Center devoted solely to children. Treatments developed at St. Jude have helped push the overall childhood cancer survival rate from 20% to 80% since the hospital opened more than 60 years ago. St. Jude shares the breakthroughs it makes to help doctors and researchers at local hospitals and cancer centers around the world improve the quality of treatment and care for even more children. To learn more, visit read St. Jude Progress a digital magazine, and follow St. Jude on social media at @stjuderesearch. Contact: Jennifer Lee Children's Hospital of Philadelphia (267) 426-6084 [email protected] Contact: Michael Sheffield St. Jude Children's Research Hospital (901) 379-6072 [email protected] [email protected] View original content: SOURCE Children's Hospital of Philadelphia

Fox Nation's 'Summer of Chaos' special revisits Seattle's failed CHOP zone experiment
Fox Nation's 'Summer of Chaos' special revisits Seattle's failed CHOP zone experiment

Fox News

time17-06-2025

  • Politics
  • Fox News

Fox Nation's 'Summer of Chaos' special revisits Seattle's failed CHOP zone experiment

Five years have passed since protesters occupied deep blue Seattle's police-free CHOP (Capitol Hill Occupied Protest) zone following George Floyd's death, sending the area into a state of lawlessness and disarray. Now Fox Nation is offering a flashback to the 2020 "Summer of Love" or, rather, the "Summer of Chaos." Fox News Seattle-based correspondent Dan Springer hosts the multipart special, which debuted Monday on the streaming platform. He previewed the flashback on "Fox & Friends" the same day. "It was supposed to be the summer of love. At least that's what Mayor Jenny Durkin was calling it when a group of protesters, unlike any I've ever seen, actually took over a part of the city, mainly because the police department left the precinct," he recalled, speaking to co-hosts Ainsley Earhardt, Lawrence Jones and Brian Kilmeade. "There were nightly protests… around the east precinct of Seattle, and there were clashes every single night, and the city, the mayor, and the police chief decided just to walk away. And what happened was the CHOP, and so we are looking back on the chop five years later." At the time, business leaders, residents and law enforcement were disrupted by the six blocks seized by protesters who were outraged over perceived police brutality and racial injustice in the wake of Floyd's May 2020 death in police custody. Initially branded the CHAZ (Capitol Hill Autonomous Zone), the area underwent a renaming when some protesters insisted the zone wasn't an attempt to secede from the United States, as the previous name implied. The entire ordeal, however, drew ire from President Donald Trump, who, during his first administration, condemned local officials for handing the area over to "anarchists." Springer said evidence of law enforcement's absence was shown in the violence that took place in the area, which resulted in the deaths of two young males, shootings, arson and a number of alleged sexual assaults. "It was chaos," he recalled. "Two young men died. The police were nowhere to be seen until shots were fired inside, and then they would go in and then leave quickly. They turned over a portion of the city. We saw the experiment of what happens when you defund the police, when you move the police outside a part of the city. Chaos ensues, and that's what the special's all about." "Summer of Chaos" debuted Monday on the Fox Nation platform in two episodes running approximately 25 minutes apiece. CLICK HERE TO JOIN FOX NATION To find out more, subscribe and begin streaming today.

Children's Hospital of Philadelphia Researchers Spotlight Adults with Hypoplastic Left Heart Syndrome (HLHS) Thriving Without Transplants
Children's Hospital of Philadelphia Researchers Spotlight Adults with Hypoplastic Left Heart Syndrome (HLHS) Thriving Without Transplants

Yahoo

time17-06-2025

  • Health
  • Yahoo

Children's Hospital of Philadelphia Researchers Spotlight Adults with Hypoplastic Left Heart Syndrome (HLHS) Thriving Without Transplants

Study Highlights Largest Single-Center Cohort of Adults with HLHS with Longest Follow-up PHILADELPHIA, June 17, 2025 /PRNewswire/ -- Researchers at Children's Hospital of Philadelphia (CHOP) reported long-term clinical outcomes for the largest single center cohort of individuals who underwent complex reconstructive surgery for hypoplastic left heart syndrome as newborns. In this cohort, more than 30% survived without a transplant to at least 35 years of age. Among these individuals, there was a significant group of adults who reported good to excellent clinical outcomes and quality-of-life (QOL), consistent with a "high-performing" Fontan phenotype. The findings were published today in the Journal of the American College of Cardiology. Prior to this study, limited data existed concerning longer-term outcomes for patients with HLHS. To bridge this gap, researchers examined long-term survival and the impact of patient factors on survival for newborns with HLHS, as well as functional and health outcomes, including QOL in adulthood. "Our study highlights the impact of CHOP's pioneering surgical approaches to pediatric heart disease," said J. William Gaynor, MD, a lead study author and surgeon in the Cardiac Center at Children's Hospital of Philadelphia. "While more research is needed, our findings offer hope for a future where high-functioning adult patients with CHD are the norm." In this retrospective study, researchers analyzed patients with HLHS and associated variants who underwent complex open-heart surgeries between January 1984 and December 2023. The authors noted that while survival has plateaued over the past two decades, they are encouraged by the adult individuals reporting good to excellent health and few Fontan-related complications without a transplant. The study findings also underscore the importance of maintaining cardiac care for adults with congenital heart disease. CHOP's Philadelphia Adult Congenital Heart Disease Center and Fontan Rehabilitation, Wellness, Activity and Resilience Development program (FORWARD) are designed to provide specialized care, evaluation and ongoing monitoring of individuals with single ventricle heart defects and Fontan circulation. In the past, research has primarily focused on identifying "risk factors" associated with worse survival and outcomes for patients with HLHS. However, in the future, CHOP's innovative programs addressing adults with CHD will be instrumental in helping researchers better understand what is driving patient success. "Moving forward, based on these study findings, we plan to focus more research on adults with CHD, looking at why they are doing well without a transplant," said Jack Rychik, MD, Director of the FORWARD program at Children's Hospital of Philadelphia. "For us, success is seeing our patients thrive as adults. We are committed to finding new, personalized ways to help them heal, grow stronger and live their best lives." Dr. Gaynor said they will continue to follow the cohort of adult individuals to better understand their lives in greater depth, including health and wellness, approach to exercise, emotional and cognitive abilities, as well as careers and relationships. This study was funded by a grant from Big Hearts to Little Hearts, an organization aimed at improving the lives of children and adults with CHD through research, programs, and advocacy. Additional funding includes the Mortimer J. Buckley Jr. M.D. Endowed Chair in Cardiac Surgery, the Thomas L. Spray, MD Endowed Chair in Pediatric Cardiothoracic Surgery and the Daniel M. Tabas Endowed Chair in Pediatric Cardiothoracic Surgery at CHOP. Gaynor et al. "Long-term Survival and Patient Reported Outcomes after Staged Reconstructive Surgery for Hypoplastic Left Heart Syndrome." JACC. Online June 16, 2025. DOI: 10.1016/ About Children's Hospital of Philadelphia:A non-profit, charitable organization, Children's Hospital of Philadelphia was founded in 1855 as the nation's first pediatric hospital. Through its long-standing commitment to providing exceptional patient care, training new generations of pediatric healthcare professionals, and pioneering major research initiatives, the hospital has fostered many discoveries that have benefited children worldwide. Its pediatric research program is among the largest in the country. The institution has a well-established history of providing advanced pediatric care close to home through its CHOP Care Network, which includes more than 50 primary care practices, specialty care and surgical centers, urgent care centers, and community hospital alliances throughout Pennsylvania and New Jersey. CHOP also operates the Middleman Family Pavilion and its dedicated pediatric emergency department in King of Prussia, the Behavioral Health and Crisis Center (including a 24/7 Crisis Response Center) and the Center for Advanced Behavioral Healthcare, a mental health outpatient facility. Its unique family-centered care and public service programs have brought Children's Hospital of Philadelphia recognition as a leading advocate for children and adolescents. For more information, visit Contact: Natalie SolimeoChildren's Hospital of Philadelphia267-426-6246solimeon@ View original content to download multimedia: SOURCE Children's Hospital of Philadelphia Sign in to access your portfolio

Eagles owner Jeffrey Lurie launches Lurie Autism Institute in Philadelphia
Eagles owner Jeffrey Lurie launches Lurie Autism Institute in Philadelphia

USA Today

time10-06-2025

  • Health
  • USA Today

Eagles owner Jeffrey Lurie launches Lurie Autism Institute in Philadelphia

Eagles owner Jeffrey Lurie launches Lurie Autism Institute in Philadelphia Show Caption Hide Caption Greg Olsen expresses excitement for upcoming Olympic flag football Former TE Greg Olsen is excited for some NFL players to showcase their skills in the upcoming 2028 Summer Olympics and the debut of flag football. Sports Seriously Philadelphia Eagles owner Jeffrey Lurie is donating $50 million to the Children's Hospital of Philadelphia and Penn Medicine to create a joint initiative of autism spectrum disorder research, the three parties announced Tuesday, June 10. According to a press release, the $50 million gift that will launch the Lurie Autism Institute (LAI) is "the largest single donation to U.S. academic medical centers focused on autism research across the lifespan." The Children's Hospital of Philadelphia (CHOP), perhaps obviously, focuses its efforts in autism research with children, while Penn largely works with the adult community. One of LAI's main goals is to combine the work of CHOP and Penn and aid researchers in painting a broader picture of autism's effects over a lifetime. As LAI Interim Director Dr. Dan Rader put it, the work they do will help researchers "better understand the condition, the heterogeneity, and how we can actually ultimately use the research to make a difference in their lives." In addition, the new institute and its funding will aim to incentivize other doctors and researchers — those not currently working on autism-related work — to join in supporting the work of CHOP and Penn Medicine. To that end, LAI will launch a certificate program from PhD trainees and postdocs called the "Next-Generation Program in Autism Bioscience," the press release said. What are the goals for the Lurie Autism Institute? "This is a time when we've seen so many advances in neuroscience, genetics, imaging, molecular pathways, processes and artificial intelligence," Lurie told USA TODAY in an exclusive interview. "It's opening up an entirely new world of possibilities for autism research." Both Rader and Lurie emphasized that a big part of LAI's work will be determining how translational therapeutics might be effective in treating individuals on the spectrum, in part with the aid of the latest in artificial intelligence. In other words, LAI's efforts will consist of collecting data from existing and ongoing research and then, using new technology and AI, figuring out how that data can be translated into a form of treatment. That treatment, according to Lurie, could consist of repurposing certain drugs or gene editing. "The complex part of autism is there's no single gene, there's no single reason," Lurie said. "So it's very research-based in order to get to the therapeutics." As LAI focuses largely on research, the clinical efforts at CHOP and Penn will continue and "likely expand" in the wake of LAI's launch, Rader said. Then, as those two organizations diagnose and work with more individuals on the spectrum, they could "recruit" those individuals as "partners in the research to better understand this complex condition." In addition, Lurie said one of the main visions he has for LAI is to become a "catalyst" for more worldwide funding and research to tackle the complexities of understanding autism. As part of those efforts, the institute will host an annual international symposium and award a prize for autism research, according to the press release. Lurie family has long history of autism research philanthropy Lurie and his family are not newcomers to advocating for autism research and awareness. 'My brother is autistic. So for my family and me, we've been supporting the autism community for ... decades," Lurie said. "That's really where it all originated from. "My mother has really led the way over all these decades as the primary investor in autism research, and the rest of the family has followed suit. What I've done is just re-emphasize that over the decades, over the years." Lurie's mother, Nancy Lurie Marks, founded the Nancy Lurie Marks Family Foundation (NLMFF) in 1977 to aid individuals with autism. In 2009, the NLMFF established the Lurie Center for Autism at Massachusetts General Hospital. In 2018, Jeffrey Lurie started the Eagles Autism Foundation. And in 2019, the Eagles, the NFL team Lurie has owned since 1994, opened the NFL's first in-stadium sensory room, "a dedicated space designed by medical professionals for those who may need a quieter and more secure environment," according to the team's official website. "And wherever we go, whether it's Brazil or the Super Bowl, we bring it along with us," Lurie said. "And (sensory-inclusive efforts have) become adopted by so many sports teams. It's gratifying." Indeed, many sports teams across various leagues — MLB, MLS, the NBA and the NHL — have adopted similar sensory rooms and other tools. The Buffalo Bills, for example, offer sensory inclusion kits that include things like noise-canceling headphones and fidget toys to help make their games and events more inclusive to their neurodiverse fans. Said Lurie: "I've always grown up in an atmosphere of acceptance and inclusivity, so when we have done things with the Eagles like we do with different organizations ... we want to try to create inclusive atmospheres for autistic people no matter if they're young or old." Increased efforts in autism research now 'more important than ever' The topic of autism research on a national level has gained steam in recent months. That has been inspired in part by U.S. health secretary Robert F. Kennedy Jr. — who in the past has promoted scientifically discredited theories that autism is linked to childhood vaccines — declaring in April that the U.S. will find the cause of autism by September. As part of those efforts, Kennedy announced "a massive testing and research effort" that will "involve hundreds of scientists from around the world." An HHS official told USA TODAY in late April that the National Institutes of Health (NIH) is using $50 million to invest in autism research. Other efforts headed by NIH — namely launching a real-world data platform using public data from federal agencies and data collected from private sector sources like smart watches and fitness trackers — and lack of clarity surrounding those efforts have resulted in heightened privacy concerns. "The use of registries and registry data in general can be a valuable tool in helping to understand the causes of diseases and disorders, but in this case, the lack of clarity around how data will be collected, shared, maintained and tested for accuracy raises red flags," a statement from the Autism Science Foundation read. Despite the relevant timing, the launch of the LAI is not an event that is happening in response to Kennedy and the HHS's recent initiative, Lurie clarified. "This notion of merging CHOP and Penn — I've been looking for where to do this for about three years," he said. "It just came to be probably about two years ago, and we've been talking ever since of how to make this great. So, no, it had nothing to do with anything else but trying to impact the lives of those with autism with all these new technologies and discoveries as best as possible." That doesn't take away from the significance of the timing, says Rader. "There's a lot of confusion right now about what are the causes of autism, what should we be doing about it, how might we better prevent it," he said. "It's more important than ever to bring this information together in a synthetic way that allows us to really better understand this complex condition. "So, I think, yes, the rationale for this got even greater over the last few months." Kinsey Crowley contributed to this report.

Eagles owner Jeffrey Lurie launches Lurie Autism Institute in Philadelphia
Eagles owner Jeffrey Lurie launches Lurie Autism Institute in Philadelphia

Yahoo

time10-06-2025

  • Health
  • Yahoo

Eagles owner Jeffrey Lurie launches Lurie Autism Institute in Philadelphia

Philadelphia Eagles owner Jeffrey Lurie is donating $50 million to the Children's Hospital of Philadelphia and Penn Medicine to create a joint initiative of autism spectrum disorder research, the three parties announced Tuesday, June 10. According to a press release, the $50 million gift that will launch the Lurie Autism Institute (LAI) is "the largest single donation to U.S. academic medical centers focused on autism research across the lifespan." The Children's Hospital of Philadelphia (CHOP), perhaps obviously, focuses its efforts in autism research with children, while Penn largely works with the adult community. One of LAI's main goals is to combine the work of CHOP and Penn and aid researchers in painting a broader picture of autism's effects over a lifetime. As LAI Interim Director Dr. Dan Rader put it, the work they do will help researchers "better understand the condition, the heterogeneity, and how we can actually ultimately use the research to make a difference in their lives." In addition, the new institute and its funding will aim to incentivize other doctors and researchers — those not currently working on autism-related work — to join in supporting the work of CHOP and Penn Medicine. To that end, LAI will launch a certificate program from PhD trainees and postdocs called the "Next-Generation Program in Autism Bioscience," the press release said. "This is a time when we've seen so many advances in neuroscience, genetics, imaging, molecular pathways, processes and artificial intelligence," Lurie told USA TODAY in an exclusive interview. "It's opening up an entirely new world of possibilities for autism research." Both Rader and Lurie emphasized that a big part of LAI's work will be determining how translational therapeutics might be effective in treating individuals on the spectrum, in part with the aid of the latest in artificial intelligence. In other words, LAI's efforts will consist of collecting data from existing and ongoing research and then, using new technology and AI, figuring out how that data can be translated into a form of treatment. That treatment, according to Lurie, could consist of repurposing certain drugs or gene editing. "The complex part of autism is there's no single gene, there's no single reason," Lurie said. "So it's very research-based in order to get to the therapeutics." As LAI focuses largely on research, the clinical efforts at CHOP and Penn will continue and "likely expand" in the wake of LAI's launch, Rader said. Then, as those two organizations diagnose and work with more individuals on the spectrum, they could "recruit" those individuals as "partners in the research to better understand this complex condition." In addition, Lurie said one of the main visions he has for LAI is to become a "catalyst" for more worldwide funding and research to tackle the complexities of understanding autism. As part of those efforts, the institute will host an annual international symposium and award a prize for autism research, according to the press release. Lurie and his family are not newcomers to advocating for autism research and awareness. 'My brother is autistic. So for my family and me, we've been supporting the autism community for ... decades," Lurie said. "That's really where it all originated from. "My mother has really led the way over all these decades as the primary investor in autism research, and the rest of the family has followed suit. What I've done is just re-emphasize that over the decades, over the years." Lurie's mother, Nancy Lurie Marks, founded the Nancy Lurie Marks Family Foundation (NLMFF) in 1977 to aid individuals with autism. In 2009, the NLMFF established the Lurie Center for Autism at Massachusetts General Hospital. In 2018, Jeffrey Lurie started the Eagles Autism Foundation. And in 2019, the Eagles, the NFL team Lurie has owned since 1994, opened the NFL's first in-stadium sensory room, "a dedicated space designed by medical professionals for those who may need a quieter and more secure environment," according to the team's official website. "And wherever we go, whether it's Brazil or the Super Bowl, we bring it along with us," Lurie said. "And (sensory-inclusive efforts have) become adopted by so many sports teams. It's gratifying." Indeed, many sports teams across various leagues — MLB, MLS, the NBA and the NHL — have adopted similar sensory rooms and other tools. The Buffalo Bills, for example, offer sensory inclusion kits that include things like noise-canceling headphones and fidget toys to help make their games and events more inclusive to their neurodiverse fans. Said Lurie: "I've always grown up in an atmosphere of acceptance and inclusivity, so when we have done things with the Eagles like we do with different organizations ... we want to try to create inclusive atmospheres for autistic people no matter if they're young or old." The topic of autism research on a national level has gained steam in recent months. That has been inspired in part by U.S. health secretary Robert F. Kennedy Jr. — who in the past has promoted scientifically discredited theories that autism is linked to childhood vaccines — declaring in April that the U.S. will find the cause of autism by September. As part of those efforts, Kennedy announced "a massive testing and research effort" that will "involve hundreds of scientists from around the world." An HHS official told USA TODAY in late April that the National Institutes of Health (NIH) is using $50 million to invest in autism research. Other efforts headed by NIH — namely launching a real-world data platform using public data from federal agencies and data collected from private sector sources like smart watches and fitness trackers — and lack of clarity surrounding those efforts have resulted in heightened privacy concerns. "The use of registries and registry data in general can be a valuable tool in helping to understand the causes of diseases and disorders, but in this case, the lack of clarity around how data will be collected, shared, maintained and tested for accuracy raises red flags," a statement from the Autism Science Foundation read. Despite the relevant timing, the launch of the LAI is not an event that is happening in response to Kennedy and the HHS's recent initiative, Lurie clarified. "This notion of merging CHOP and Penn — I've been looking for where to do this for about three years," he said. "It just came to be probably about two years ago, and we've been talking ever since of how to make this great. So, no, it had nothing to do with anything else but trying to impact the lives of those with autism with all these new technologies and discoveries as best as possible." That doesn't take away from the significance of the timing, says Rader. "There's a lot of confusion right now about what are the causes of autism, what should we be doing about it, how might we better prevent it," he said. "It's more important than ever to bring this information together in a synthetic way that allows us to really better understand this complex condition. "So, I think, yes, the rationale for this got even greater over the last few months." Kinsey Crowley contributed to this report. This article originally appeared on USA TODAY: Lurie Autism Institute: Jeffrey Lurie funds new research initiative

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