Enhanced Patient Comfort: Traditional dental impressions can be messy and uncomfortable. The Itero Scanner eliminates the need for these molds, providing a much more comfortable experience for patients.
Exceptional Accuracy: The high-resolution 3D images produced by the Itero Scanner offer unparalleled precision. This results in better-fitting restorations, crowns, bridges, and orthodontic appliances, ensuring optimal patient outcomes.
Faster Turnaround Times: Digital impressions can be transmitted instantly to dental labs, significantly reducing the time required to fabricate dental appliances. This means patients can enjoy quicker turnaround times and fewer visits to the dentist.
Improved Monitoring and Preventive Care: The Itero Scanner allows for detailed tracking of changes in dental health over time. This capability is invaluable for preventive care, enabling Dr. Gutierrez and her team to detect and address potential issues before they become more serious.
Dr. Maria Gutierrez’s Commitment to Excellence Dr. Maria Gutierrez is widely recognized for her dedication to incorporating the latest advancements in dental technology into her practice. Her commitment to excellence is reflected in every aspect of patient care at Majestic Smile Studio.
“We are thrilled to integrate the Itero Scanner into our practice,” said Dr. Gutierrez. “This technology not only enhances the precision and quality of our treatments but also significantly improves the overall patient experience. We are committed to providing our patients with the best possible care, and the Itero Scanner is a testament to that commitment.”
About Majestic Smile Studio Majestic Smile Studio, conveniently located in the heart of Yorba Linda, CA, is a premier dental practice renowned for its exceptional patient care and comprehensive range of dental services. Under the leadership of Dr. Maria Gutierrez, the practice offers a wide array of treatments, including preventive care, cosmetic dentistry, restorative dentistry, and orthodontics. The dedicated team at Majestic Smile Studio is passionate about creating healthy, beautiful smiles for patients of all ages and backgrounds.
Patient-Centric Approach At Majestic Smile Studio, patient satisfaction and comfort are paramount. The addition of the Itero Scanner reflects the practice’s patient-centric approach, which aims to make dental visits as pleasant and efficient as possible. The practice’s welcoming atmosphere, combined with the expertise of Dr. Gutierrez and her team, ensures that every patient receives personalized care tailored to their unique needs.
For more information about the Itero Scanner and the comprehensive range of dental services offered at Majestic Smile Studio, please visit our website or contact our office directly. We look forward to welcoming you to our practice and providing you with the exceptional dental care you deserve.
A recent update to the Raman Chemical Warfare Agents (CWA) library increases the number of compounds identified to 111 deadly substances. This reflects Metrohm’s continued dedication to developing comprehensive Raman libraries for individual markets and applications. The CWA library is a part of the overall Metrohm Comprehensive Raman Library, which contains over 20,150 compounds.
PLAINSBORO, N.J., Aug. 15, 2024 /PRNewswire-PRWeb/ — Identifying CWAs is critical for both disposal operations and warfighters engaged in active conflict. This library focuses on chemical precursors, nerve agents, and the largest collection of Novichok compounds available. It supports disposal and mitigation of historical and current threats.
Women We Admire is pleased to announce The Top 50 Women Leaders of Charlotte for 2024
NEW YORK, Aug. 15, 2024 /PRNewswire-PRWeb/ — Women We Admire is pleased to announce The Top 50 Women Leaders of Charlotte for 2024. Charlotte, North Carolina, recently earned recognition as the fifth best place to live in the US by US News and World Report, thanks to its exceptional job market, robust economy, and high quality of life for residents. As the city continues to attract top businesses and talented leaders, its key industries—ranging from business services and IT to banking, biotech, and retail—are flourishing.
First, we acknowledge financial executive Margaret Borg, Senior Director of Enterprise Climate Risk Strategy for Ally. Borg is dedicated to the development of Ally’s comprehensive enterprise climate risk strategy and environmental stewardship programs. With a commitment to equality, she also served as an inaugural leader for the Charlotte Chapter of the Women ALLYs Employee Resource Group.
We also recognize the accomplishments of Kati Everett, Senior Vice President of Value Proposition Transformation for Novant Health. At Novant Health, Everett is spearheading the development of a distinct value proposition aimed at enhancing consumer engagement with the brand, and she is responsible for creating processes, programs, and services that bring the value proposition to life across the organization.
Finally, we congratulate influential business and strategy leader Judy Kay, Chief Commercial Officer and Chief Strategy Officer of Honeywell, a company that invents and manufactures technologies to address tough challenges linked to global macrotrends. Kay has worked with several Fortune 500 CEOs and led strategy and commercial teams to create over $2 billion in market value.
Please join us in celebrating the accomplishments of The Top 50 Women Leaders of Charlotte for 2024.
Raz Barnwell (Sodexo), Antonia Elliott (Securitas Security Services USA), Amy Nichols (Wells Fargo & Co.), Ana Moran (Foundever), Marisa Thalberg (United Parks & Resorts), Colette Matthews (Circle K), Judy Kay (Honeywell), Kimberly Rinard (Bayer), Holly Webdale (TE Connectivity), Cecily Jowers (Salesforce), Tina Schoen (Atrium Health), Alexandra S. Wolff (Atrium Health, Levine Cancer), Katheryn Peterson (Atrium Health), Taranda M. Frost (Xylem Inc.), Roni Jansen (Coca-Cola Consolidated), Mercedes Sullivan (TIAA), Margaret Borg (Ally Financial), Evonne Bennett Brown (Credit Karma), Ashleigh Anderson (Credit Karma), Sarah Fatherly (Queens University of Charlotte), Kathy Flick (Nextiva), Wendy Zhang (Hayward Holdings), Reaiah Brown Johnson (Cell Signaling Technology), Brie Barton (Cardlytics), Kelly Benish (Constant Contact), Britta Miano (Red Classic), Dr. LaDonna Battle (Trillium Health Resources), and many others.
Women We Admire provides news and information on today’s women leaders in business, entertainment, sports, motherhood, medicine, law, and many other fields. We cover a broad range of topics and areas of interest aimed at recognizing the achievements of exceptional women while inspiring others to aim high and continue their journey towards reaching their full potential. Women We Admire and its affiliates circulate its content to over 32,000 individuals and businesses.
Jordan built a successful mentoring community that helped thousands double their income, from $35,000 to $70,000 within months, by transitioning them into tech sales careers. However, his company was destroyed by Ferguson, which led to over $2million in legal fees and a ~$1.5M judgment against him personally, despite never owning assets or setting foot in Washington in his entire life.
Key Findings:
1.Egregious Actions by the AGO: Washington Judge Michael Ryan described Ferguson’s conduct as “egregious, serious, without excuse, and the result of willful disregard…Punitive sanctions are warranted.”
2.Pattern of Corruption: Judge Ryan condemned Ferguson’s pattern further, “[Ferguson] has been sanctioned for similar discovery conduct in the past. Despite the judiciary’s best efforts, [Ferguson] has not learned its lesson. “[Ferguson] has been called out by the Court of Appeals. The situation at present is little more than a continuation of conduct that has plagued the AGO for nearly thirty years.”
3.Intentional Violation of Federal Court Order: Despite a federal court order in Delaware requiring the AG to dismiss and release all parties related to Prehired, including Jordan personally, the AG intentionally violated this order by moving for summary judgment against Jordan and his company within six weeks. Ferguson’s AGO did not deny these actions, because silence in court is better than perjury.
4.Impact on Washington Income and Careers: Ferguson’s actions eliminated career opportunities for thousands, potentially tens of thousands of families over the upcoming years. By shutting down Prehired, the AGO reduced the earning potential of many families, which may have a detrimental effect on the economic growth and stability of the state.
Joshua Jordan remarked, “These court documents confirm a pattern of corruption that has gone unchecked for decades. As a small-town entrepreneur, I never imagined I’d be the one to expose such deep-rooted corruption from across the country. Ferguson’s actions didn’t just destroy my business; they revealed how this office has been abusing its power for years.”
Jordan continued, “I’m not the only one who’s been caught in Bob Ferguson’s crosshairs, but I’m willing to say what others won’t.
As a small-town guy from South Carolina, I’ve made the tough decision to stop doing business in Washington until Ferguson is out of office and the decades of corruption finally come to an end… and I encourage others to do the same.
It’s heartbreaking to see the residents of Washington paying the price through higher taxes and shrinking business and career opportunities.
Instead of targeting small businesses like some kind of organized crime syndicate, the AG should be focusing on real issues like homelessness, crime, and the drug epidemic that are tearing apart the lives of everyday folks in Washington.”
Critical Questions Arising:
Why does the AG’s office appear to target small, out-of-state businesses?
How many Washington residents, often in their 30s and seeking better careers, have been denied opportunities due to Ferguson’s misconduct?
Given this legacy of corruption and destruction throughout his political career, can Bob Ferguson be trusted to lead Washington as governor?
Are we to believe that after a lifetime of corruption, Ferguson will suddenly become the leader Washington needs?
How much worse can things get in Washington? Bob Ferguson seems to say, “Hold my beer.”
Small business owners will compete for a total of $175,000 in prize money at pitch events scheduled in person in Philadelphia, Houston, Los Angeles and Des Moines as well as a national, virtual competition for those who cannot travel to these locations. As premier sponsor, Global Atlantic is supporting the major aspects of all the program components, including the first and second place prizes. Principal® is funding the third-place grants. LPL Financial Charitable Foundation (“LPL Financial Foundation”) is contributing to the virtual training workshops for founders on how to develop a compelling pitch. A grant from Glenn W. Bailey Foundation provides general program support.
“Supporting entrepreneurship is a core pillar in our mission,” commented Hayley Little, executive director at the Glenn W. Bailey Foundation. “We have been past SCORE supporters and see our role in this program series as a path to drive visibility for the economic contributions of small businesses and SCORE’s contribution to that.”
“A small business owner’s success can have an exponential influence on building their generational wealth. The LPL Financial Foundation is honored to stand behind this initiative to provide entrepreneurs with access to resources that enable them and their families to thrive for years to come,” said Melissa Buchanan, president of the LPL Financial Foundation.
“This program and its many components would not be possible without the generosity of all the sponsors that have come forward,” said Liz Sara, president of the SCORE Foundation. “We are thrilled that their combined financial commitment will contribute to significant impact on the small businesses as well on the communities in which they operate.”
About Glenn W. Bailey Foundation The Glenn W. Bailey Foundation serves Florida, New York, Connecticut and DC area organizations working to help us realize our vision and continue our mission of fostering pathways to success in STEM careers and entrepreneurial opportunities.
About Principal Financial Group® Principal Financial Group® (Nasdaq: PFG) is a global financial company with 20,000 employees1 passionate about improving the wealth and well-being of people and businesses. In business for 145 years, we’re helping more than 62 million customers1 plan, protect, invest, and retire, while working to support the communities where we do business, and build a diverse, inclusive workforce. Principal® is proud to be recognized as one of the 2024 World’s Most Ethical Companies2, a member of the Bloomberg Gender Equality Index, and named as a “Best Places to Work in Money Management3.” Learn more about Principal and our commitment to sustainability, inclusion, and purpose at principal.com.
1 As of March 31, 2024 2 Ethisphere, 2024 3 Pensions & Investments, 2023
About LPL Financial and the LPL Financial Foundation LPL Financial Holdings Inc. (Nasdaq: LPLA) was founded on the principle that the firm should work for advisors and institutions, and not the other way around. Today, LPL is a leader in the markets we serve, serving more than 23,000 financial advisors, including advisors at approximately 1,000 institutions and at approximately 580 registered investment advisor firms nationwide. We are steadfast in our commitment to the advisor-mediated model and the belief that Americans deserve access to personalized guidance from a financial professional. The LPL Financial Charitable Foundation, Inc. is an independent 501(c)(3) non-profit organization that supports advancing the economic well-being of underserved populations, with an emphasis on providing training for individuals interested in the financial services industry and providing resources and training to small-business owners. Together, we have the power to bridge the wealth gap. By joining forces, we can empower those from under resourced communities to successfully pursue careers in financial services.
About the SCORE Foundation: The SCORE Foundation, a 501 (c) (3), is the philanthropic arm of SCORE, America’s premier source of free and confidential mentoring to small business owners and entrepreneurs. The Foundation funds SCORE education programs, resources and services that enable SCORE to increase its impact and reach in fostering vibrant small business communities nationwide.
What truly sets Treering apart is its unwavering commitment to giving back to schools. A portion of every purchase from the new product line goes directly to the customer’s school, providing much-needed funds for educational resources and programs.
“We understand the challenges parents face in finding the time and resources to create lasting keepsakes of their child’s school years,” said Kevin Zerber, CEO of Treering. “Our expanded platform, designed with our valued customers in mind, not only addresses this need but also allows parents to contribute to their child’s school community.”
With this pioneering platform, Treering solidifies its position as a one-stop shop for unique school memories. By seamlessly merging technology, personalization, and philanthropy, Treering sets a new standard for how families capture and cherish their children’s school experiences.
“Every child’s school experience is a story worth telling,” said Zerber. “Our platform empowers parents to become the storytellers while making a tangible impact on their child’s school.”
About Treering
Treering is redefining the yearbook experience. As a leading platform for creating personalized and engaging yearbooks and keepsakes, we empower schools, students, and families to capture and celebrate life’s special moments. Through cutting-edge technology, students can showcase their unique stories with custom pages, online signatures, and interactive features. Our new line of customizable photo products offers more ways to cherish memories. Treering operates at zero cost to schools, making high-quality yearbooks accessible. Combining traditional print with digital innovation delivers a modern yearbook experience that resonates with today’s students.
It also offers a platform for cancer survivors to give back to their community by volunteering as peer mentors. With 22 trained peer mentors from the Atlantic Health community now accessible, Cancer Hope Network and Atlantic Health continue to expand the program by recruiting, onboarding, and training new volunteers. These peer mentors are available at each of the Atlantic Health System oncology locations to share information, talk about their experiences, and help patients and caregivers access the program. In addition to the Atlantic Health System trained mentors, Cancer Hope Network has approximately 500 peer mentors across the country.
The program reflects the two organizations’ shared commitment to holistic cancer care and community empowerment, and is an important part of a whole-person, patient-centered approach to cancer care. The program also leverages the expertise and resources of both organizations, bringing together a multidisciplinary team comprising Social Work, Breast Nurse Navigators, Integrative Support Services, Oncology Managers, Community Volunteers, and Cancer Hope Network staff.
“A cancer diagnosis not only impacts our physical health but also takes a tremendous toll on our mental, emotional, and social wellbeing,” said Beth Blakey, Executive Director & COO of Cancer Hope Network. “Our collaboration with Atlantic Health System allows us to reach cancer patients and those who love them where they are to address the psychosocial aspects of their experience and help in getting them through it, with people who have been there. We’re thrilled that this program is progressing to the point of offering onsite volunteers at all Atlantic Health System oncology locations, helping to realize our vision of a world in which no one faces cancer alone.”
Cancer Hope Network provides personalized, supportive connections for patients and caregivers based on their diagnosis and treatment, as well as their mental, emotional, social, cultural, and spiritual needs, individual lifestyle choices, and other personal circumstances. For over 40 years, Cancer Hope Network has been training peer mentors to constructively and safely share their experiences, offer practical advice, and answer questions with a goal of inspiring hope and confidence.
“Atlantic Health System has a commitment to be there for patients at every step of their cancer care journey,” said Lydia Nadeau, RN, Executive Director, Atlantic Health System Cancer Care. “We look not just at delivery of medical care but at the bigger picture: providing the psychosocial and emotional support patients need. Cancer Hope Network has for decades been a leader in this approach to care, and we’re proud to be getting this program into full operation this September.”
Atlantic Health System and Cancer Hope Network provide ongoing training to ensure volunteers can provide effective support to newly diagnosed cancer patients. Each Atlantic Health System site has a designated lead to supervise, provide direction, troubleshoot issues, and offer support to volunteers. Atlantic Health System also continuously monitors and evaluates the program’s services to identify areas for growth to further enhance patient support.
Atlantic Health System cancer survivors who’d like to give back by supporting someone currently impacted by cancer can signup here to become a peer mentor. Current Atlantic Health System cancer patients and caregivers can reach out for support here to request a free, confidential match.
About Cancer Hope Network
Cancer Hope Network provides free and confidential one-on-one peer mentorship for cancer patients, survivors, and those who love them. Our trained survivor and caregiver volunteer mentors provide support from diagnosis, through treatment and into post-treatment survivorship. They have faced more than 98% of the cancers that will be diagnosed this year, speak 15 languages, and are prepared to offer hope and guidance through a wide variety of challenges that accompany a cancer diagnosis.
All mentor/mentee matches are overseen and supported from beginning to end by Cancer Hope Network’s programs team of healthcare and social work professionals. For more information about Cancer Hope Network and its mission, please visit: https://cancerhopenetwork.org/.
About Atlantic Health System
Atlantic Health System is at the forefront of medicine, setting standards for quality health care in New Jersey, Pennsylvania and the New York metropolitan area. Powered by a workforce of 20,000 team members and 5,440 affiliated physicians dedicated to building healthier communities, Atlantic Health System serves more than half of the state of New Jersey including 14 counties and 7.5 million people. The not-for-profit system offers more than 550 sites of care, including its seven hospitals: Morristown Medical Center in Morristown, NJ, Overlook Medical Center in Summit, NJ, Newton Medical Center in Newton, NJ, Chilton Medical Center in Pompton Plains, NJ, Hackettstown Medical Center in Hackettstown, NJ, Goryeb Children’s Hospital in Morristown, NJ, Atlantic Rehabilitation Institute in Madison, NJ and through its partnership with CentraState Healthcare System in Freehold, NJ.
The system includes Atlantic Medical Group, part of a physician enterprise that makes up one of the largest multispecialty practices in New Jersey with more than 1,600 physicians and advance practice providers. Joined with Atlantic Accountable Care Organization and Optimus Healthcare Partners they form part of Atlantic Alliance, a Clinically Integrated Network of more than 2,500 health care providers throughout northern and central NJ.
Atlantic Health System provides care for the full continuum of health care needs through 24 urgent care centers, Atlantic Visiting Nurse and Atlantic Anywhere Virtual Visits. Facilitating the connection between these services on both land and air is the transportation fleet of Atlantic Mobile Health.
Atlantic Health System leads the Healthcare Transformation Consortium, a partnership of six regional hospitals and health systems dedicated to improving access and affordability and is a founding member of the PIER Consortium – Partners in Innovation, Education, and Research – a streamlined clinical trial system that will expand access to groundbreaking research across five health systems in the region.
Atlantic Health System has a medical school affiliation with Thomas Jefferson University and is home to the regional campus of the Sidney Kimmel Medical College at Morristown and Overlook Medical Centers and is the official health care partner of the New York Jets. https://www.atlantichealth.org/
RefAssured’s integration with symplr dramatically increases speed of candidate onboarding while delivering quality and growth opportunities.
SAN FRANCISCO, Aug. 15, 2024 /PRNewswire-PRWeb/ — RefAssured, a provider of automated reference checking solutions for the staffing industry, today announced that it has partnered with symplr, the market leader in enterprise healthcare operations software solutions. Together, symplr and RefAssured will deliver RefAssured’s integration with symplr Contingent Talent Management (CTM) to enable healthcare staffing agency customers to speed and simplify the hiring process.
Healthcare staffing has undergone a transformative change in the past several years as surging demand for contingent healthcare talent has normalized in the wake of a receding COVID-19 pandemic and greater spending austerity amid economic uncertainty. As a result, healthcare staffing leaders find themselves in a period of evolution, where critical priorities for the future include increasing operational efficiency and access to and engagement with qualified talent.
RefAssured, which has grown rapidly within the healthcare staffing space since emerging from stealth in early 2023, now has a strong footprint in the top 100 largest healthcare staffing firms using its automated reference checking and hire quality platform. The company’s 100% customer referenceability rating is predicated on its staffing-specific workflows the company’s commitment to meeting healthcare staffing agencies’ needs.
“Our team at symplr is thrilled to partner with RefAssured,” said Manny Gagliardi, Vice President, Contingent Talent Management at symplr. “Their innovative reference-checking platform offers tremendous value to symplr’s healthcare staffing customers, providing a seamlessly integrated solution. We’re excited about the possibilities this partnership brings and the benefits it will deliver to our customers.”
RefAssured’s reference checking platform works seamlessly with symplr’s CTM automatically writing reference data, candidate lead generation data, and credentialing data back into the Applicant Tracking System and integrating symplr forms and templates. RefAssured not only automates the reference checking process with an average 26-hour turnaround time and 95%+ completion rate, but also generates thousands of new warm candidate leads at an average opt-in rate of 20%, and automatically notifies appropriate account teams when leads are created to ensure rapid response and nurture.
Customers are thrilled with the results of using RefAssured with symplr CTM:
Jenna Peterson, CHRO of GrapeTree Medical Staffing: “Before we even launched with RefAssured, we did a deep dive to understand the efficiencies that it would provide us – the time we’d save our specialists from having to do everything manually and do all the uploading, downloading, and busy work involved with the system we used before. The time we’re saving with RefAssured, the ease with which it integrates with our symplr CTM system, the more profitable work that our specialists can focus on now – it quickly exceeds the cost of the platform in the new value in generates. This is just basic math. If we hadn’t bought RefAssured, we wouldn’t have all these benefits that make our business operate better.”
Kelly Borman, COO of PRN Healthcare: “RefAssured is third-party validation through a secure platform – a credible third party running the reference process. That’s a big deal. Our industry – healthcare staffing – hasn’t previously demanded this, but they should. RefAssured is on the forefront of giving the industry the solutions it needs before it even realizes it needs them.”
Brian Vesce, CEO of RefAssured, shared his reasoning for why the combination of RefAssured and symplr has generated compelling results for mutual customers.
“We’re not here to build technology that we think is cool for the sake of it,” said Vesce. “We’re here to solve real problems that cause pain for healthcare staffing agencies and their talent. We know that symplr feels the same way, which is why this partnership is so meaningful. And the early returns for our joint customers have already been astounding. That’s the greatest validation there is – knowing our customers love using RefAssured with symplr and that they’re getting huge ROI from the combination.”
RefAssured is a provider of automated reference checking solutions for the staffing industry. With an extensible platform designed to improve efficiency, speed placements, provide hire quality, and unlock growth opportunities, RefAssured does more than just verify references – it validates decision-making. With a team comprised of successful serial entrepreneurs, staffing executives, and technology innovators, RefAssured is a platform for human potential. Visit https://www.refassured.com/ to get started.
Media Contact Vinda Souza Chief Marketing Officer RefAssured [email protected]
National Tay-Sachs & Allied Diseases Association (NTSAD), leader in the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases, releases its Voice of the Patient report that summarized their Externally-led Patient-Focused Drug Development (EL-PFDD) meeting on GM2 gangliosidosis – Tay-Sachs and Sandhoff diseases.
BOSTON, Aug. 15, 2024 /PRNewswire-PRWeb/ — National Tay-Sachs & Allied Diseases Association (NTSAD), leader in the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases, convened an Externally-led Patient-Focused Drug Development (EL-PFDD) meeting on GM2 gangliosidosis – Tay-Sachs and Sandhoff diseases – earlier this year. This pivotal meeting was aimed at bringing the voices of patients and caregivers to the forefront of drug development discussions for GM2. “Being able to invite members of the NTSAD community who are living with or caring for a loved one with one of these devastating conditions to participate in the meeting was essential to our role as a leading patient advocacy organization,” remarked Kathleen Flynn, NTSAD’s CEO. “They are the experts, and their voices need to be heard early and often in the drug development and regulatory processes. We were grateful to the US FDA for granting us the opportunity to host this meeting and, most importantly, to the individuals and family members who shared their personal stories.” Testimonials throughout the meeting painted a clear picture of the devastation caused by GM2. The meeting incorporated diverse perspectives through expert presentations, patient and caregiver video stories, panel discussions, caller remarks, and polling data. A commonality among the participants was the heartbreaking journey entire families endure as they are left powerless as the cruel progression of the disease takes hold.
Families expressed a preference for treatments that offer tangible improvements in daily life, such as the ability to smile, hold hands, or walk without fear of falling. Dan, father to Amélie who died from infantile Tay-Sachs disease at eight years old, noted a key treatment goal would be “the ability to reach out and grab something, grab a toy, grab food, even holding a hand.”
Treatments that offer small gains or marginal improvements would be a lifeline for the GM2 community, providing hope in the face of overwhelming daily challenges. There is a notable willingness among parents of young children and adults with late-onset GM2 to accept significant risks associated with drug development in hopes of improving their loved ones’ daily experiences and functionality, underscoring a shift from focusing solely on extending survival to enhancing quality of life.
Kate, whose three-year-old son lives with Tay-Sachs, said, “My child has been given a death sentence. I have no choice but to watch him slowly fade away until the day comes when GM2 finally wins the battle over his body.”
Contributions shared during this all-day meeting were synthesized into the GM2 Voice of the Patient report, which captured the perspectives and priorities of the GM2 community to guide future research and treatment development. The report was recently published by NTSAD to serve as a vital resource for the FDA and other stakeholders, including industry representatives involved in clinical research, and findings will be presented at scientific conferences. Mathias Schmidt, PhD, CEO of JCR Pharma USA, remarked, “This is more than any textbook can teach us and gives us guidance as to what matters most for parents, patients, caregivers.”
To learn more about Tay-Sachs and Sandhoff diseases and the daily impact they have on affected individuals and families, read the GM2 Voice of the Patient report here.
About NTSAD
Founded in 1957, National Tay-Sachs & Allied Diseases Association (NTSAD) leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do. For more information, please visit NTSAD.org.
About Externally Led, Patient-Focused Drug Development (EL-PFDD) Meetings
Patient-Focused Drug Development (PFDD) is a systematic approach to help ensure that patients’ experiences, perspectives, needs, and priorities are captured and meaningfully incorporated into drug development and evaluation.
EL-PFDD History
The PFDD initiative started in 2012 as part of FDA’s commitments under the Prescription Drug User Fee Act (PDUFA) V. After conducting FDA-led PFDD meetings, FDA recognized there are many more diseases/conditions that can be addressed beyond those that were planned and conducted by FDA. To help expand the benefits of FDA’s PFDD initiative, in 2015, FDA announced the opportunity for externally led (EL-PFDD) meetings. EL-PFDD meetings are planned and hosted by patient organizations, with the input of FDA staff, and use the process established by FDA-led PFDD meetings as a model.
FDA’s Role in Medical Product Development and Evaluation
One of FDA’s missions is to protect and promote public health by evaluating the safety and effectiveness of new drugs, biologics, and devices. FDA does not develop drugs nor conduct clinical trials. FDA does, however, play a constructive role in guiding, helping, or evaluating at some stages of the pre-clinical, translational, and clinical development work.
Media Contact
Kathleen M. Flynn, National Tay-Sachs and Allied Diseases Association – Boston, MA, 1 617-277-4463, [email protected], ntsad.org
SOURCE National Tay-Sachs and Allied Diseases Association – Boston, MA
PITTSBURGH (August 15, 2024) – When patients have unusual health symptoms or a rare medical condition, their doctors are often left searching for similar cases by checking medical journals or by chasing down peer specialists across the country. So-called “rare disease odysseys” can be frustrating for caregivers and patients alike – the process of narrowing the clinical possibilities, visiting different specialists, obtaining a diagnosis, and settling on a treatment plan can drag on for years.
But now, Allegheny Health Network (AHN) has a new technology at its disposal for tackling these rare diseases: Epic’s “Look-Alikes” tool, which is embedded into Epic’s electronic health record (EHR) system. Look-Alikes, in turn, scans Epic’s “Cosmos” research dataset, which houses billions of pieces of de-identified patient data, drawing on 12.2 billion patient encounters gleaned from more than 257 million patients, 1,500 Epic-affiliated hospitals and 352,000 physicians worldwide.
Using the Look-Alikes tool, AHN doctors can now query the Cosmos dataset to find doctors who have treated patients whose symptoms mirror the unusual cases they are seeing locally. Whether across the state or across the country, if there’s a strong match between patients and symptoms, AHN’s physician can connect with the doctors who managed the similar cases, compare notes, and potentially arrive at a diagnosis and treatment plan much more quickly.
The tool is bi-directional, meaning AHN doctors who have already diagnosed a patient with one of the dataset’s rare diseases can also be contacted by other physicians who have patients with similar symptoms or the same diagnosis. For now, the Look-Alikes system flags symptoms related to 37 rare diseases – conditions such as erythropoietic protoporphyria (a metabolic disorder that causes severe pain when a patient is exposed to sunlight), Beckwith-Wiedemann syndrome (which causes overgrowth of limbs and organs), and Friedreich ataxia (which causes neurological degeneration).
In June, AHN became the first health system in the region, and one of the first in the U.S., to start using Epic’s Look-Alikes technology. Epic is one of the world’s largest providers of electronic health records technologies, and its EHR products are broadly considered the industry’s gold standard. AHN has been utilizing Epic’s EHR and patient-charting technologies since 2013, and also utilizes Epic’s patient-facing records portal, known as MyChart.
“When a patient has a rare or unusual condition, finding the correct diagnosis and developing an appropriate treatment plan is a bit like searching for a needle in a haystack,” said Susan Manzi, MD, MPH, chair of the AHN Medicine Institute, and director of the AHN Autoimmunity Institute’s Lupus Center of Excellence. “With the Look-Alikes tool, we have the ability to search for that needle far more efficiently – or better yet, we can consult with someone who has already found it.”
The Look-Alikes tool will prove especially useful for the Autoimmunity Institute, and for patients with autoimmune diseases. Autoimmune conditions, some of which are rare to begin with, can be notoriously difficult to diagnose – symptoms can come and go, mimic those caused by other diseases, vary from person to person, and affect a variety of bodily systems simultaneously.
“AHN is a national referral center for many difficult-to-diagnosis autoimmune conditions,” Dr. Manzi said. “This tool allows us to connect with other physicians in the country that have similar patients but, more importantly, it provides a tool for those physicians to find us.”
According to Global Genes, an advocacy organization advocacy for people fighting rare and genetic diseases, the average time from disease onset to accurate diagnosis for a rare disease is 4.8 years. And even when a rare disease is quickly diagnosed, the scarcity of similar patients often means there is little clinical evidence to draw from when determining the best course of treatment for a patient.
All AHN physicians – including primary care and specialty providers – are able to utilize the tool. Many of the diseases currently being tracked by Look-Alikes exhibit a combination of neurological, musculoskeletal, hematologic and autoimmune symptoms.
An AHN doctor utilizing the tool enters the patient’s unusual symptoms and other health indicators, known allergies, and demographic information. Look-Alikes then scans the Cosmos dataset for doctors treating similar patients and allows the physicians to connect with each other. The system is intelligent: If no matches are found, the system suggests similar searches that might find matches.
And when an AHN doctor diagnoses the condition, the patient’s de-identified record can be “tagged” with the disease in question, making it easier for other physicians to seek AHN’s expertise.
“Through this tool from Epic, AHN physicians will be able to augment rare disease research, physician collaboration, and clinical decision support capabilities while still protecting patient privacy,” said John J. Gabrick, AHN’s vice president, Clinical Information Systems.
