CTSI Welcomes Informaticist Jack Chang

In 2009, Jack Chang went to the leadership of the Henry M. Jackson Foundation for the Advancement of Military Medicine and told them that there was a need for a program that did one thing and one thing only: managed information.

“Researchers were using old-fashioned ways to manage data. The majority was on discrete spreadsheets and word/pdf documents, and they were buried in massive data files that couldn’t be discovered or integrated with any other data sources,” said Chang. “Things were handled individually by different departments and there was no centralized mechanism to support research.”

Jack Chang, M.S.

Jack Chang, M.S.

So Chang got the go-ahead to create an information management program. Five years later, the program had grown to over 10 staffers, including a programmer, an administrator, and several bioinformaticians, biostatisticians and clinicians, all of whom were dedicated to make sure information was easily accessible and usable.

“People were dying for that kind of setup,” said Chang. “But they didn’t even know we could do it, because they all had different expertise.”

In June, Chang joined the CTSI, and working with researchers across the University, he’s hoping to help create a similar infrastructure. Tim Dye, director of biomedical informatics at the CTSI, said that Chang has a wealth of experience in several key areas.

“He will help us jumpstart some use-cases that show our institution’s capacity to tackle technical challenges, like handling very large, complex datasets, amassing and reusing administrative and clinical data for research purposes, and assuring that privacy and security are priorities in the management of research data,” said Dye.

Data management systems have been created by other departments, of course, so Chang has spent much of his first few months on the job meeting with other researchers and informaticists within the University, to ensure he isn’t duplicating the efforts of others.

“Instead, we should try to integrate those efforts,” said Chang, senior associate of biostatistics and computational biology and senior research informaticist for the CTSI.

Data management has become a priority for the CTSI and other areas of the university because making data accessible is only the first step. The data also needs to be catalogued and well described.

For example, many university labs have been collecting blood or tumor samples for years, but the sample quality can vary wildly according to specific study requirements. So the mere knowledge that those samples exist isn’t helpful to a researcher unless it comes with a lot of additional information.

“You have to know what kind of specimens you have,” said Chang. “Is there enough blood? Are there enough tumor samples? How are the specimens being processed? Have they been well preserved, and how? High quality samples lead to high quality research, but poorly managed samples are worthless.”

When Chang isn’t at the CTSI, you might find him working on his golf game or watching classic American cinema — Roman Holiday starring Audrey Hepburn is one of his favorites. His office is within the CTSI Director’s Suite; stop by and say hello.

CTSI Announces 2014 Faculty Pilot Funding Awardees

2014 Pilot Funding Awardees: R. Eliseev, R. Looney, E. Guancial, S. Spinelli, C. Morrell, E. Messing

2014 Pilot Funding Awardees: R. Eliseev, R. Looney, E. Guancial, S. Spinelli, C. Morrell, E. Messing

Six URMC faculty members are beginning new research projects funded by CTSI pilot awards for 2014-2015. The CTSI’s pilot program offers faculty members one-year awards for up to $50,000 to facilitate new research and future funding. Multidisciplinary research is strongly encouraged, as well as clinical and community based research, practice-based research, and health services research. The CTSI is currently accepting applications for the 2015 pilot awards, abstracts are due by September 2nd, 2014 and the full RFA can be found here. The 2014 faculty awardees are:

Roman Eliseev, MD, PhD
Assistant Professor of Orthopaedics
Project: Improving mitochondrial function in MSCs to accelerate fracture repair in aging

Elizabeth Guancial, MD
Assistant Professor of Medicine (Hematology/Oncology)
Project: Chemoprevention of bladder cancer through estrogen receptor modulation

Richard J. Looney, MD
Professor of Medicine (Allergy, Immunology, and Rheumatology)
Project: Role of the Gut Microbiome in Preventing Allergic Disease

Edward Messing, MD
Chair of Urology
Project: Exosomes from bladder cancer patients can serve as biomarkers of disease

Craig Morrell, DVM, PhD
Associate Professor of Medicine (Aab Cardiovascular Institute)
Project: Novel microRNA Based Therapy to Improve CD4+ T-cell Responses to Vaccination

Sherry Spinelli, PhD
Research Associate Professor of Pathology and Laboratory Medicine
Project: The Role of Microparticle-Derived Thy-1 (CD90) in Type 2 Diabetes Mellitus

Congratulations to all of the awardees!!!!!

CTSI Pilot Grant Leads to $3.6M in NIH Funding

As schoolchildren enter their teenage years, they tend to start making more of their own health care decisions. But that transition can be challenging, and certain behaviors — such as making sure they take their daily asthma medication — can sometimes fall through the cracks.

In an attempt to help urban teens keep their asthma symptoms in check, Jill Halterman, M.D., M.P.H., associate professor of pediatrics at UR Medicine’s Golisano Children’s Hospital, has developed a study which combines giving students their medications at school with motivational counseling specifically designed for teens.

Jill Halterman, M.D., M.P.H.

Jill Halterman, M.D., M.P.H.

“We plan to encourage the teens to reflect on how good they feel when they’re using their preventive medication routinely,” said Halterman. “For example, if the student is an athlete, they might notice better performance in their sport. We’ll help them think about that so they can decide, on their own, whether they want to be independent with taking their medication.”

The 5-year study, which was developed in partnership with the Rochester City School District and the district’s nurses, is supported by a $3.6 million grant from the National Institutes of Health. A pilot study, which generated initial data used in the application to NIH, was funded by the CTSI.

“Dr. Halterman’s study is a fascinating project that has the potential to improve health for teens across the country, and it’s also a perfect example of what our Pilot Program is designed to do,” said Kathleen Jensen, executive director of finance for the CTSI.  “Relatively small investments from the CTSI can be used to generate the early stage data that can lead to big awards like this one.”

The most common chronic childhood illness, asthma affects an estimated 1 in 10 children and teenagers in the United States. Low-income and minority youth develop asthma even more often, and Halterman has spent the past decade attempting to improve outcomes for this population.

The team’s School-Based Asthma Therapy trial for younger children, which began in 2006 and involved 530 children in the City School District, showed reduced asthma morbidity and decreased absenteeism for students who took their daily medication in the presence of a school nurse.

The new study will modify and expand on some of these methods, randomly assigning teens to three different conditions. For the first six to eight weeks of the school year, some teens will take their medication in front of a school nurse, who can provide instruction, if necessary. The hope is that the teen can then transition to independent medication use after receiving a special counseling intervention that emphasizes the benefits of daily preventive therapy.

The study, which aims to enroll 430 teenagers starting in the 2014-2015 school year, will compare the teens’ adherence and asthma outcomes to groups of teens that receive alternate levels of intervention. The ultimate goal of the program is develop an effective new system of care for urban teens that can be continued in the city school district and disseminated to other sites.

Director’s Update – July 2014

Every month, the CTSI Stories Blog will post excerpts from ongoing conversations with the institute’s co-director’s.

Below, Harriet Kitzman offers her takeaways from the Mini Summer Research Institute, which was held on June 19.

On the Mini Summer Research Institute:


Harriet Kitzman, co-director of the CTSI

Overall, I thought it went very well, and many of the presentations were exceptionally good. The morning session covered a significant amount of new methodological information, and it had the grand design in terms of community-centered health, which Nana Bennett covered. Tim Dye addressed new sources of quantitative data — new sources of big data. Sally Norton offered new approaches to qualitative research, unfamiliar to many in the room but increasingly called for by new funding mechanisms. This was combined with the example from Helena Temkin-Greener, that was very helpful to many. And, Sally Thurston, of course, did a very clear job in discussing the challenges of design and analysis.

[Editor’s note: Recaps of select presentations from the Mini Summer Research Institute will be available on the CTSI Stories Blog starting in mid-July!]

On why it’s important to involve collaborators early when putting together a study design:

Sally Thurston’s talk contributed to the spirit of collaboration by describing the worst thing that can happen; it occurs when people are working on a grant, and they sit and talk amongst themselves for an entire year. They get this grand design of what they’re going to do, but then they get to the budget and they realize as they’re doing it that they can’t write a budget description, because they haven’t been clear on how they will conduct the work and analyze the data.  And then, they go to biostatistics and they hear, “For this to be a credible piece, your sample has to be three times as large as it is,” and they know it is unrealistic to obtain the sample with the funds available. So, the notion of getting those pieces together early and working on the steps in design and implementation collaboratively is really important.

On improvements for next year:

I always think of things in terms of what one could have been done, but during lunch, there was a nice dialogue. So I think the lunch break could have been longer — maybe one less presentation in the afternoon and a little more time for dialogue would have been good. But all in all, it was the first time we’d done this, and I think what it showed is that there are a lot of people interested in the questions about where these fields are going and who might be willing to join in the pursuit.

Previous director’s updates:

June 2014 – Karl Kieburtz gives an overview of the CTSI’s six pillars.

Public Health Grand Rounds: Oral Health and People with Intellectual Disabilities

The Special Smiles station at the Special Olympics is a happy, welcoming place. Drawn in by the stuffed animals and the over-sized toothbrushes, athletes who may previously have been too scared to set foot in a dentist’s office are soon willing to let a medical professional give them a quick oral screening.

Lisa DeLucia, D.D.S.

Lisa DeLucia, D.D.S.

But for myriad reasons, people with intellectual disabilities experience health problems at a significantly higher rate than the general population, and access to health care can be especially challenging in more specialized fields, such as oral health.

“About 7 percent of the athletes we see need urgent dental care,’” said Lisa M. DeLucia, D.D.S., who has volunteered with the Special Olympics since 2004. “Unfortunately, the people we send home very often don’t have anywhere to go.”

So for the past decade, DeLucia and others have been working to expand access to oral health services to people with intellectual disabilities. DeLucia, a pediatric dentist at Eastman Institute for Oral Health, and Onolee Stephan, M.P.H., director of community health programs for the Special Olympics, shared these efforts at a recent Public Health Grand Rounds. The presentation was part of the “Summer in the City” series from the Center for Community Health.

Onolee Stephan, M.P.H.

Onolee Stephan, M.P.H.


For people with intellectual disabilities, several barriers exist that serve to stymie access to oral health.

“Most of our athletes have Medicaid, and Medicaid brings a lot of challenge with reimbursements for dental providers,” said Stephan. “People with disabilities also sometimes require longer appointment times, and as a result, a lot of our athletes can’t find dental providers in their local communities.”

While this can be a problem even in larger cities such as Rochester, it’s especially pronounced in more rural areas. There are only 38 dentists in Livingston County and only 13 in Orleans County.

“As you can imagine, with only a few dentists, the number that accept Medicaid shrinks significantly,” said DeLucia.

In the hopes of providing support to more dentists, DeLucia surveyed local providers, asking what would compel them to increase the number of patients with disabilities in their practice. Somewhat surprisingly, reimbursements weren’t the main issue.

“It was a concern, but the primary thing these providers needed was someone to discuss cases with, and continuing education courses,” said DeLucia.

Taking action

So in 2012, URMC, the Eastman Institute for Oral Health, and the Special Olympics came together to form a local chapter of the American Academy of Developmental Medicine and Dentistry. The chapter now consists of medical and dental students, residents, and fellows, and recently received a $50,000 grant from the Special Hope Foundation to create a training program that connects Special Olympians to dental resources.

In addition to providing dental education to local students, the group helps to spread awareness about the pejorative term “retarded,” asking community members to use “intellectual disability” instead. The group has also worked to help establish person-first terminology, encouraging the use of “person with intellectual disability,” rather than “intellectually-disabled person.”

And earlier this year, they held one of their largest clinical events to date, wherein 30 residents, faculty, and staff provided high-end dental work for 16 Special Olympians and people with intellectual disabilities. In June, DeLucia received the Dr. David Satcher Community Health Improvement Award for her efforts.

But despite the advances locally, the group knows that much work is still needed, both in the Rochester area and elsewhere.

“People with intellectual disabilities remain the most marginalized and discriminated against population in the world,” said Stephan. “It transcends national, cultural, and socioeconomic boundaries.”

CTSI Ramping up Efforts to Support Clinical Trials of the Future

woman_with_crystal_bal_450A patient with Parkinson’s disease goes out for a walk, and his mobile phone transmits his heart rate, his movement speed, how far he walks, how much he sweats, and when he stops.

Doctors on the other end analyze the data, comparing notes and symptoms with those of other patients in real time.

And the research subjects almost never need to set foot in a clinical research facility.

“This is where we’re going with clinical trials,” said Karl Kieburtz, M.D., M.P.H., director of the Clinical and Translational Science Institute. “And that suggests we’re going to have to develop methodologies to handle all that data.”

Kieburtz, who spoke on clinical trials at the June MEDSAC meeting, outlined the ways that the CTSI is working to build an infrastructure to handle the wealth of information generated by these trials of the future.

Earlier this year, the CTSI brought aboard Tim Dye, Ph.D., to lead the institute’s biomedical informatics work. More recently, informaticist Jack Chang was hired to help the CTSI and the informatics team create tools that will better enable researchers to access novel datasets.

In the more immediate future is a pilot program to create a more streamlined process on the front end.

“Right now you have to send your research study everywhere – to the IRB, to ORPA, to ORACS,” said Kieburtz. “We’re creating a single portal for all the information you need to have, and need to provide.”

Clinical trials represent the smallest of the CTSI’s six pillars, in terms of budget. But it’s an area that could grow quickly, as mobile phone technology and real time data starts to replace the brick and mortar clinical research centers used today.

Read more about the CTSI’s six pillars in this Q&A with Karl Kieburtz.

URMC Center for Community Health Honors Satcher Award Recipients


From left: Nancy Bennett, M.D., director of the Center for Community Health; award winners Anne F. Brayer, M.D., Lisa M. DeLucia, D.D.S., and Caroline Nestro, R.N., M.S.

The fifth annual Dr. David Satcher Community Health Improvement Awards were presented Monday by the University of Rochester Medical Center in the Class of ’62 Auditorium.

The awards are named in honor of the 16th Surgeon General of the United States, who completed his medical residency at URMC in 1972 and received an honorary degree from the University in 1995. Satcher went on to become a leading voice in the field of public health and has dedicated his career to public health policy.

The annual grand rounds address was delivered by Adewale Troutman, MD, MPH, MA, CPH, professor, director of Public Health Practice and Leadership, University of South Florida. His talk, titled “Health Equity and Social Justice – Not Just a Walk in the Park,” preceded the awards ceremony.

The community health improvement awards distinguish individuals who have made significant contributions to community health in the greater Rochester region through research, education, clinical services and outreach efforts. The awards reflect Medical Center’s mission to continue to develop and expand university-community partnerships that support participatory research and interventions that reduce health inequalities and improve the community’s health.

The Dr. David Satcher Community Health Improvement Awards recipients for 2014:

Anne F. Brayer, M.D., professor in the Department of Emergency Medicine and Pediatrics and the director of both the Injury Free Coalition for Kids of Rochester and the Pediatric Emergency Medicine Fellowship, has had a long-term interest in pediatric injury prevention. She was one of the founders of the Injury Free Coalition for Kids of Rochester in 2003 because unintentional injury was the leading cause of death in children less than 18 years of age in Monroe County. Under Brayer’s leadership, several programs have been implemented to prevent injuries in children to address topics such as child passenger safety, bike safety, healthy and safe homes, teen driving, safe play space, and safe sleep.

Lisa M. DeLucia, D.D.S., assistant professor and pediatric dentist at Eastman Institute for Oral Health, has worked in partnership with Special Olympics Special Smiles, a dental screening program that addresses oral health disparities among those in the community with disabilities. She has been involved with this program since 2004 as a volunteer and was trained in 2006 to serve as a clinical director, all while in dental school. She has recruited and educated dental professionals, students, and residents in caring for patients with special needs, and is working to address gaps in care for this population. Since 2006, she has organized three to four events annually, providing oral health screenings to upwards of 200 athletes with the help of more than 30 volunteers at each event.

Caroline Nestro, R.N., M.S., associate director of the Office of Mental Health Promotion in the Department of Psychiatry, has been committed to advancing mental health through active community engagement in her current role and previously as senior clinical nurse specialist in Psychiatric Mental Health Nursing at Strong Memorial Hospital. She is leading her department’s diversity and inclusion, cultural competence and patient-centered activities, while being an active participant in institution-wide and community diversity initiatives. She has worked on several projects that utilize film, literature and the arts to open discussions and raise awareness about stigma, health inequities and Rochester’s history.