To accomplish the HEN's ambitious aims, the Intermountain-led Hospital Engagement Network is partnering with 7 other leading healthcare systems to complete work in 10 patient safety area. The Intermountain-led HEN partners include: Baylor Health Care System, Dartmouth-Hitchcock, Denver Health, Mayo Clinic, Providence Health and Services, and the Salt Lake City VA Medical Center. Across these seven systems, evidence-based best practices in 10 patient safety areas will be harvested and disseminated to the engaged hospitals for their use in quality improvement efforts. The priority areas include OB trauma, Adverse Drug Events, Patient Falls and Immobility, Unnecessary Readmissions, Pressure Injuries, Catheter Acquired Urinary Tract Infections, Central Line Associated Blood Stream Infections, Ventilator Acquired Pneumonia, Venous Thrombo-Embolism, and Surgical Site Infections. From the harvested best practices, valid and reliable quality and cost measures for tracking and feeding back comparative information to learning partners will be determined. Experience in implementing these best-in-class improvements will be documented and shared for continuous learning among our larger learning community of one hundred-plus engaged hospitals. Training, shared learning, technical support, and comparative outcomes measurement with feedback reporting will drive goal-directed results.

To learn more about the Intermountain-led Hospital Engagement Network, visit the website at www.henlearner.org.

The final guidance is to please reference both NCRR and NCATS on all products resulting from grants that have been transferred. A proper acknowledgment example follows:

"The project described was supported by the National Center for Research Resources and the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant XXXXX. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH."

"Dr. Varner is an exceptionally experienced clinician, researcher and administrator and I'm grateful he has agreed to add this interim position to his already full plate as associate director for Women's Health Research at the U's Center for Clinical and Translational Sciences (CCTS), co-director of the U's Institute for Women's and Children's Health Research, and director of Perinatal Research for Intermountain Healthcare. Dr. Varner is also the newest member of the U's Benning Society and holds an H.A. and Edna Benning Presidential Endowed Chair."

He will be supported in this new role by Jennifer Logan, Ph.D., who has served as program director for the Personalized Health Care Program since 2008.


What is personalized health care?

Personalized health care, often referred to as genomic medicine, is a core part of the health sciences strategic research plan. The promise of personalized health care, often popularized in the scientific and lay press, is that one day physicians will be able to routinely identify a person's genetic predisposition to a disease, predict the course of outcome, and identify which preventive and treatment regimens would be most effective.

Our program is designed to capitalize on the University's historic strengths in areas such as human genetics, population genomics, drug development, and biomedical informatics. The goals for the program are fivefold:

* Promote the highest quality individualized health care at the lowest, appropriate cost.
* Serve as the University's coordinating and information center for personalized health care-related initiatives.
* Facilitate and support the development of clinical and research tools and practices that can benefit patients in health care settings across our community.
* Educate University and community clinicians and researchers in personalized health care-related practices.
* Foster collaborative relationships with Intermountain Healthcare and other personalized health care-related organizations in Utah and across the country.


Opportunities for Funding

Under Dr. Varner's direction, the program will oversee two one-year grant programs designed to foster the advancement of personalized health projects at the University.

* The first will provide funding for genome sequencing using samples that faculty have already collected.
* The second will provide seed money (up to $50,000) to fund pilot projects that bring tangible value to the University's mission. These projects might include:
o Clinical and research infrastructure specifically focused on increasing personalized healthcare capacity.
o Educational programs and/or curricula specifically focused on personalized healthcare.
o Collection of pilot data that have a high likelihood of securing significant extramural funding.

Questions about these funding opportunities should be directed to Jennifer Logan, at 801-585-6279 or jennifer.logan@utah.edu.

The Future of the Program

We are moving aggressively to position the University as a national leader in personalized health care. During the past three years we've been identifying faculty doing research in related fields. Under Dr. Varner's leadership, the program will continue coordinating research efforts and will begin reaching out to colleagues in large group practices, such as Intermountain Healthcare.

Please join me in thanking Dr. Varner for taking on this exciting project.

This is a new funding opportunity for faculty. The program is outlined in detail in the attached letter, application, and program guidelines. Please forward attachments to faculty.

Researchers at the University of Utah are making strides in understanding and combating a motor neuron disease known as Spinal Muscular Atrophy. The spinal muscular atrophies are a group of inherited diseases that cause progressive degeneration of motor nerves resulting in muscle weakness. The most common form of the disorder, due to the deletion of a critical gene on chromosome 5, is currently the leading cause of inherited infant and child mortality. Spinal Muscular Atrophy (SMA) is the second-most common autosomal-recessive inherited disorder after cystic fibrosis. Approximately 1 in 40 carry the gene for this disease.

With the generous support of Families of Spinal Muscular Atrophy, researchers in the University of Utah Department of Neurology are making significant headway in the fight against the disease. Once very poorly understood, SMA is now considered one of the genetic conditions closest to finding an effective treatment.

Kathryn J. Swoboda, MD, leads the team of University of Utah researchers investigating the disease and is the Principal Investigator for Project Cure SMA. "Families of SMA made an early and astute commitment to the development of a clinical trials network that has paved the way to bring new therapies rapidly to the clinic. Now, as several novel therapies approach clinical trials, we are well prepared to prove or disprove their efficacy. Without the tremendous support of Families of SMA over the past seven years, we would be unable to tackle the challenges that this disease presents to us as physicians, parents and researchers. Families of SMA, from its modest beginnings more than 25 years ago, has served as a uniting force in the fight to improve the lives of every person affected by this disease."

Project Cure SMA is a clinical trials network of seven sites located in the United States and Canada, funded fully by Families of SMA. Their donations have included $2.75 million to the University of Utah team, along with more than $5 million in additional funding for other sites in the Project Cure SMA network. So far, the program has focused on testing existing drugs and validating outcome measures for use in future clinical trials that may lead to a treatment for Spinal Muscular Atrophy. Recently, an international expansion of these efforts has involved FSMA's international Partners in Argentina and Germany. Families of SMA has had the foresight and the courage to generously fund such work far in advance so that as novel drugs currently being designed for SMA become available, having a fully operational clinical network with a sufficient number of sites to conduct pivotal SMA drug trials will help attract and encourage biotech and pharmaceutical companies to invest in SMA drug development.

"We couldn't have accomplished what we have without the tremendous support of Families of SMA," notes Sandra P. Reyna, MD, Clinical Trials Manager for Project Cure SMA. "Their leadership has allowed us to develop a clinical trials network which will continue to pave the way for these efforts, and hopefully, encourage others to join us in developing the additional resources we will need to successfully support clinical trials for children and adults with SMA."

"Families of SMA initiated the Project Cure SMA Clinical Trials Network as a collaborative effort with leading SMA clinicians to achieve several goals for our community", said Jill Jarecki, PhD, FSMA Research Director. Establishing the network has provided us with the means to conduct natural history studies that increase our understanding of disease progression, and to build models for designing SMA clinical trials that test the safety and efficacy of drug candidates in all SMA populations. Project Cure SMA has allowed us to build the needed infrastructure, including adequate regional clinical trial site representation across the US, for the testing of novel drug candidates while we have been conducting trials to test repurposed drugs for safety and efficacy in SMA patients. To date, the Project Cure Network has run 5 clinical trials testing repurposed drugs in all SMA patient populations".

The clinical spectrum of SMA ranges from early infant death to normal adult life with only mild weakness. However, the majority of those affected develop symptoms by the age of two years. Patients with SMA often require comprehensive medical care involving multiple disciplines, including neurology, pulmonology, orthopedic surgery, critical care, and physical medicine and rehabilitation; and physical therapy, occupational therapy, respiratory therapy, and clinical nutrition support. Genetic counseling is invaluable for the parents and family members who may also carry the gene. Intellect is normal and given the opportunity and support they need, they frequently thrive in the educational arena and successfully overcome their physical limitations to lead productive, vibrant lives.

Through the work of Dr. Swoboda and her colleagues in the University of Utah Departments of Neurology and Pediatrics, every child with SMA evaluated at the University of Utah's Clinical Neurosciences Center or at Primary Children's Medical Center (PCMC) is given the opportunity to enroll in the Project Cure SMA clinical trials. This allows the researchers to collect clinical information that can be used to advance their knowledge of the full spectrum of problems facing SMA patients and their families, whether or not these patients choose to enroll in the therapeutic clinical trials. These state of the art facilities and support of the University of Utah Center for Clinical and Translational Science have been invaluable assets for supporting clinical research studies and trials for patients who travel here from Utah and around the country to consult with our team. Patients and families in turn benefit from the teams' experience and the series of specific protocols developed in Utah for optimizing clinical management of patients with SMA.

Committed to supporting research with the highest probability of advancing potential drug candidates, Families of SMA has forged collaborations with leading medical institutions and industrial partners in the United States and internationally. The funding of the Utah team is part of Families of SMA's broader strategy to integrate basic, translational and clinical research efforts into coordinated efforts aimed at facilitating drug discovery for the treatment of spinal muscular atrophy. Since its inception, the organization has funded more than $50 million in research initiatives, formed a number of collaborations with biotechnology companies, reduced barriers in the drug development process by providing open access to mouse models of SMA and has been instrumental in working with both Congress and the National Institutes of Health in creating awareness and increasing federal funding for the disease.

Families of SMA will be holding the 2010 Annual SMA Conference for patients, families, and researchers in Santa Clara, California June 24-27, 2010. For more information, call 800-886-1762 or email info@fsma.org. />

About Project Cure SMA: Project Cure SMA is a collaborative initiative between Families of SMA and clinical investigators designed to help facilitate the rapid translation of promising new therapies to individuals with SMA. The primary goal of Project Cure SMA is to develop safe and well-tolerated clinical protocols to help identify effective therapies for SMA. More information can be found at www.projectcuresma.org.

About Families of SMA: A small group of parents started Families of SMA in 1984 to raise funds for SMA research to cure the disease, and support all affected families. At the time, very little was known about Spinal Muscular Atrophy, and very little research was being conducted. Today, FSMA has a different story to tell. Families of SMA has raised and funded over $50 million for SMA research through support from generous individual donations and numerous fundraising events held by volunteer families and local chapters. More information can be found at www.curesma.org.

About the University of Utah Center for Clinical and Translational Science: The University of Utah Center for Clinical and Translational Science builds on the University's strengths in genetics and bioinformatics to translate promising bench science into practices that improve human health. The Center serves as an academic home for clinical and translational research, developing innovative health services for the community and health researchers, and training a new generation of clinical and translational investigators. The Center and its partners will increase the visibility, volume, and quality of participatory research by connecting investigators at the University with other health care institutions, clinical practitioners, public health personnel, patients, and research participants. The Center also will formally link research activities across systems that together provide health care coverage to 80 percent of Utah's population as well as patients in surrounding states. More information can be found at www.ccts.utah.edu.

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