Ray Dorsey: Telehealth Will Transform the Health Care System

The University of Rochester Clinical and Translational Science Institute’s associate director for Clinical Trial Methods and Technologies, Ray Dorsey, M.D., M.B.A., co-authored a review article in the New England Journal of Medicine published this week.  The review suggests that the growth of telehealth, a patient-centered initiative for electronic distribution of health-related services and education, will have a profound impact on the delivery of health care in the coming decades.


Ray Dorsey

Ray Dorsey, M.D., M.B.A. 

Dorsey, who is also the director of the Center for Human Experimental Therapeutics at the University of Rochester Medical Center, and his co-author Eric Topol, M.D., at the Scripps Research Institute, believe telehealth will reduce the cost and increase the convenience of health care. Instead of waiting 20 days to secure a 20-minute appointment that, with travel time factored in, could take up two hours, patients could have a virtual visit with their physician almost any time of day in the comfort of their own home.

Telehealth is growing rapidly and its use has expanded from treating acute conditions, like stroke, to episodic and chronic conditions, like ear infections and Parkinson’s disease. Likewise, the application of telehealth has spread from hospitals to clinics, and finally to patients’ own mobile devices.

In fact, Dorsey and his colleagues at the University of Rochester developed a mobile phone application to remotely assess symptom progression and medication effectiveness in Parkinson’s disease patients. This application is part of the first national randomized controlled trial of telehealth in Parkinson’s disease, led by Dorsey. That trial, which will be completed later this summer, will determine the effectiveness of using video calls to connect Parkinson’s patients with expert care.

While telehealth has potential to provide basic health assessments to previously unreachable patients, Dorsey and Topol acknowledge that it will not replace traditional office visits. However, if properly harnessed, these new technologies will help providers and health care systems meet the growing burden of chronic diseases, increase access to care, and return health care to its patient-centered roots.

For a related article, click here.

To read the full review, click here.

Erika Augustine: Battling Batten Disease

Batten diseases are rare genetic disorders that affect 2 to 4 of every 100,000 infants born in the U.S. Genetic mutations disrupt the function of the nervous system causing vision loss and epilepsy starting between ages 5 and 10 and ultimately resulting in death in the 20’s or 30’s.

When Erika F. Augustine, M.D., assistant professor  of Neurology and Pediatrics, and in the Center for Human Experimental Therapeutics began caring for patients almost 10 years ago,  prospects for Batten disease treatments were limited. Now, Augustine and her colleagues are conducting clinical trials for a therapies that target the root of the disease rather than simply alleviating symptoms.

Below, Augustine, who serves as a member of the Strategic Leadership Group for the CTSI and has utilized the CTSI’s Clinical Research Center to conduct her clinical trials, discusses her research and why she became a doctor and a researcher.

The University of Rochester Medical Center is home to approximately 3,000 individuals who conduct research on everything from cancer and heart disease to Parkinson’s, pandemic influenza, and autism. Spread across many centers, institutes, and labs, our scientists have developed therapies that have improved human health locally, in the region, and across the globe. To learn more, visit http://www.urmc.rochester.edu/research.

“mPower”-ing Patients with Parkinson’s Disease

Ray Dorsey, M.D., David M. Levy professor of Neurology, director of the Center for Human Experimental Therapeutics, and associate director for Clinical Trial Methods and Technologies at the CTSI and URMC, is featured below in a video discussing his research involving a smartphone application that helps assess symptoms of Parkinson’s disease patients from the comfort of their own homes.

Dorsey helped develop the mPower smartphone app, which is a clinical research tool that is helping researchers understand why certain Parkinson’s disease patients experience certain symptoms and how those symptoms change over time. As Dorsey says, the app is not a “one way street of information.” It allows patients to track their own symptoms day to day and provides them with information to help them better manage their symptoms.

One of the most important aspects of this application and clinical research is that breaks down a barrier to research participation and health care access. People can participate in the study and conduct assessments entirely on their phone – without ever having to visit a clinic.

Dorsey’s goal: “Anyone, anywhere in the U.S. can participate in research – regardless of who they are and where they live.”

The University of Rochester Medical Center is home to approximately 3,000 individuals who conduct research on everything from cancer and heart disease to Parkinson’s, pandemic influenza, and autism. Spread across many centers, institutes, and labs, our scientists have developed therapies that have improved human health locally, in the region, and across the globe. To learn more, visit http://www.urmc.rochester.edu/research.

Success Stories: Incubator Grant leads to R01 Investigating Psoriatic Arthritis Biomarker


Arthritis in multiple joints of the hands.

Past Incubator Program awardee, Christopher Ritchlin, M.D., M.P.H., Professor and Chief of Allergy/Immunology and Rheumatology in the Department of Medicine at URMC, has just won a $2.5 million grant from the National Institutes of Health to explore a promising biomarker and possible drug target of psoriatic arthritis (PsA).

Approximately 650,000 people in the US are affected by PsA, which occurs when the body’s immune system mistakenly attacks its own skin and joint cells causing painful skin plaques and inflammation of joints and tendons. In addition, nearly half of all PsA patients experience erosion of the bone in their affected joints, which is caused by overabundance of bone-chewing cells, called osteoclasts.


Christopher Ritchlin, M.D., M.P.H.

In previous studies funded by the CTSI Incubator Program Award, Ritchlin and his collaborators began to shed light on how and why osteoclasts run amok in PsA.

They zeroed in on a protein called DC-STAMP, which is expressed at high levels in cells that fuse together to form osteoclasts. When they inhibited DC-STAMP with an antibody, osteoclasts could no longer form. They also found that certain PsA drugs caused a drop in DC-STAMP when patients experienced symptom relief.

In their new grant, Ritchlin and his collaborators plan to explore how DC-STAMP fosters formation of osteoclasts using an innovative technique called optogenetics to activate DC-STAMP with light and observe what happens downstream. They will also explore whether inhibiting DC-STAMP can reduce inflammation of joints and bone damage in PsA and if it can be used to predict which PsA patients will respond to current therapies.

Initial results from the grant have highlighted the necessity of thorough investigations of disease mechanisms. While Ritchlin and his collaborators originally showed that DC-STAMP fosters early steps of osteoclast formation leading to bone erosion, new data suggests it may actually inhibit at later stages.

Ritchlin credits the Incubator Program for setting this work in motion by “bringing people together who normally don’t work together, in a unique environment to explore questions of importance to cell biology and medicine.”

Read more about Ritchlin’s Incubator project and other current and past projects that have received the award.

RocHackHealth: A Path Toward New Solutions to Health Care Issues

RocHackHealth, a health care data hackathon hosted by the University of Rochester CTSI, was held this past weekend, April 8th –  10th, and was a great success. Teams of “hactivists” competed to come up with innovative big data solutions to three issues currently facing the US health care system.

The A Team, which included Alykhan Alani, Adora D’Souza, Arnab Sarkar,  Anas Abidin,  Sushant K,  won the first challenge using Medicare data to predict and prevent hospital readmissions.

The second challenge,  to examine patterns of controlled substance prescription in the US and identify potential over-prescribers was won by Team AHA members, Anthony Corbett, Hillary Lincourt, Andy Straw. In fact, Team AHA managed to identify several medical providers who are currently being investigated, or are serving sentences, for over prescribing narcotics.

Finally, Team Datalization members Giulia Paris, Hunter Johnston, Thanatcha Khunket (Kwan), Zino HuThe won the third challenge using Medicare data to identify social networks of health care providers in New York State.

For more images and information on the winners, click here.

UR Connected: Linking Researchers and Research Coordinators at UR


Are you a research coordinator in need of a job? Or a researcher looking for a coordinator?

UR Connected is like Monster.com for research coordinators.  Like Monster, UR Connected is a web application that allows job seekers and employers to find one other – only in this case the job seekers are all research coordinators and the employers are research investigators at the University of Rochester.

Within UR Connected, research coordinators can post their qualifications, advertise availability for new or additional projects, browse job titles and HRMS IDs for posted jobs, or browse opportunities to contribute to in their spare time. On the other hand, research investigators or hiring managers can search for coordinators based on their qualifications and availability, post HRMS jobs, and advertise opportunities that are more limited than a posted position in HRMS.

Noreen Connolly, M.S., J.D., clinical research coordinator for the Strong Epilepsy Center and Department of Anesthesiology and advocate for UR Connected, has used the system from both perspectives: job seeker and employer.

As a self-proclaimed life-long learner Connolly loves the opportunity UR Connected provides for research coordinators to “step to the side and learn something different, learn a new field, and to continue to grow” by picking up jobs outside their area of expertise.

Like Connolly, coordinators can also fill in the lulls in their full-time work with part-time or temporary jobs on UR Connected. These jobs offer an opportunity for research coordinators to acquire additional working hours and gain a little expertise in an area outside their regular work without having to completely change jobs. This application also makes it easier for out-of-work research coordinators to find full-time positions of interest to them. This helps the university retain a very good, experienced pool of coordinators and reduces the need to constantly train new people.

Connolly says she found the application to be very easy to get into and easy to use. Her advice: “Don’t hesitate to use UR Connected. It’s very simple and it’s worth the few minutes of your time and effort.”

She also recommends periodically updating your profile. If you are a research coordinator or investigator who has a profile or posting in UR Connected, take a moment to ensure all of your information is current and correct. It could be the difference between finding that golden opportunity or missing it.

If you are a research coordinator or investigator interested in more information visit UR Connected, or send your questions to researchhelp@urmc.rochester.edu.

Dye Receives Fulbright Specialist Program Award

Timothy Dye, Ph.D., professor of Obstetrics and Gynecology, Pediatrics, Public Health, and Medical Informatics, has been awarded a Fulbright Specialist Program Award by the Institute of International Education.

Dye, whose work crosse4270s global health and biomedical informatics, will work at the United Nations University’s Institute for Computing and Society in the Macao Special Administrative Region of the People’s Republic of China, in January 2016.

The director of biomedical informatics at the Clinical and Translational Science Institute, Dye works to combine global health with big data. The Fulbright Award will help him further his research in the emerging field of “Data Diplomacy,” which seeks to better understand the role that data sharing plays as an agent in social and political relationships around the world.

The Fulbright Specialists Program, created in 2000 to complement the traditional Fulbright Scholar Program, provides short-term academic opportunities of two to six weeks to U.S. faculty and professionals. The program is funded by the U.S. Department of State, Bureau of Educational and Cultural Affairs.

CTSI Pilot Program: Vitamin D metabolization in pregnant women

Eva Pressman, M.D., discusses her CTSI Pilot Project, Vitamin D Kinetics During Pregnancy.

Dr. Pressman is The Henry A. Thiede Professor and Chair of The Department of Obstetrics and Gynecology at The University of Rochester.

Video by Susanne Pritchard Pallo.

If you’d like to see your research featured in the CTSI blog, email Sean_Dobbin@urmc.rochester.edu.

Success Stories: Pilot Grants lead to R01, new business

Lisa DeLouise, Ph.D., M.P.D., associate professor of Dermatology, has received two Pilot Grants from the CTSI, each of which helped to support a line of research that blossomed into much more. She shared her experiences with CTSI Stories.


Thanks for taking the time to chat! Tell us a little about the Pilot Grants you’ve gotten through the CTSI.

The first one I got was in 2007, and it was for nanoparticle skin research. I look at cosmetic products to see if they have efficacy and any unintended toxicity issues, and back in 2006, I got involved in the question of whether nanoparticles that are increasingly formulated into various topical cosmetic products have any of these side effects.

In sunscreens, for example, there are ingredients that can have unintended biological consequences, so I was looking at a couple compounds used in sunscreens – titanium oxide and zinc oxide – which absorb UV light so your skin is protected. When these compounds were first used, they were approved by the FDA at the micron level – so, relatively speaking, the particles were too large to seep through skin.

But in the 1990s, manufacturers learned to make the metal oxide particles on the nano-scale – 1,000 times smaller. Since it was the same elemental composition,  it didn’t have to go through rigorous FDA testing again, but scientists became concerned that the nano-sized particles might have different properties than the micron-level ones. Some compounds, for example, can become more optically and electrically active, or more likely to catalyze reactions that could cause oxidative stress in tissues

It seems like they might be more susceptible to being absorbed by skin.

Yes, that was also a concern – whether they could go through the skin barrier. So that’s what really launched my interest in this field of nanotoxicology, and I got some funding from the CTSI Pilot Program to look at this in the early going.

I was also questioning whether people with skin diseases – who tend to have defects in their skin barrier – could be more susceptible to penetration of these materials. So in collaboration with Lisa Beck, M.D., we made some of these comparisons.

What did you find?

Well, much of the research is still ongoing, because thanks in part to the early data gathered from the CTSI from 2007-2008, I was able to get an R01 grant in 2011. So I’m in my fourth year of that. But we do know that nanoparticles go through the skin and more easily through barrier impaired skin. The titanium dioxide has the tendency to conglomerate on the skin surface, so it loses it’s nanomaterial status. The zinc oxide, though, does get into the body, though it’s still unclear whether it’s penetrating the skin as nanoparticle or in another form such as a dissociated ions.

Very interesting. How about the second CTSI Pilot grant you received in 2011?

In 2011, the CTSI supported an application of microarray technology that allowed us to sort and enrich rare cells in the blood. The award was critical to fostering a collaboration between myself and James Kobie, Ph.D. We haven’t landed the R01 yet – we’re still trying – but the big success story is that the application of the technology has proven very positive.

In cancer, a lot of tumors are infiltrated with B-cells, which are antibody-making cells. So understanding the antibodies and other proteins secreted will help us understand the disease and why the B-cells are there sometimes and not there other times. Also, in cancer therapeutics, the field seems to be headed toward controlling the immune system and training it to fight the cancer in a more effective way.

So with the microarray technology, we were able to prove that you could look specifically at these human B-cells and their secretions. Earlier this year, we started a company named Nidus Biosciences to explore the potential of this technology. The CTSI is what really kept us going with momentum in that crucial early stage.

CTSI Success Stories: Research Help, other CTSI resources, makes life easier for study coordinators

Elizabeth Werner, senior health project coordinator, and Ann Marie Scorsone, senior human subject research coordinator, have utilized CTSI resources for several of their research studies with the Division of Neonatology. They recently spoke to CTSI Stories about their experiences.


Elizabeth Werner, left, and Ann Marie Scorsone, right.

Thanks for taking the time to chat! Tell us a little bit about your work and how you came to use the resources within the CTSI.

Werner: We’re research coordinators in the Neonatal Intensive Care Unit (NICU), and I’m currently doing a test with infants where we put stretchy bands around their chest and abdomen and measure whether their breathing is synchronous or asynchronous, which can have health implications. However, the band itself is not FDA approved, so our study is a device trial because the FDA wants to ensure that the babies are safe and that they won’t be harmed by this.

I’ve personally used the Research Help Desk for their clinicaltrials.gov support, because that site can be really hard to navigate. Carrie Dykes — and before her, Cindy Doane — have both come over and helped me through the system and have identified the problems that I’d been having.

Scorsone: I’m part of the National Institute of Child Health and Human Development (NICHD), and within that is the neonatal research network. So we currently have about 10 studies right now that we’re doing in the NICU as part of that network.

One of those studies is something we’ve been engaged in for 15 or more years: Dr. Dale Phelps’s study on retinopathy of prematurity (ROP), which is one of the leading causes of early childhood blindness or long term eye dysfunction. We’re in a Phase III FDA trial with that right now and it includes a long term follow up, so we had Ann Dozier come speak with us about research subject retention. And Dr. Dozier really helped us in Rochester come up with ideas on how to help approach the families and talk about the long term follow up right in the beginning.  We get a great follow-up rate at their 2-year visits – it’s over 90 percent – and she’s been a big help with that.

What types of suggestions did she make?

Scorsone: She talked about really understanding what gets in the way in terms of participation, and why you tend to lose people as a trial goes on. We’ve really tried to maintain contact with our families so they feel like they’re not just part of a research project, but actually a part of a family here.

Werner: We talk to people about how this is a research institute, and how things that are helping your baby today started with studies that other families have participated in, in the past. That attitude, I think, has helped shape our whole division. We’ve really worked hard over the past five years to make both the patients and the staff feel like part of a research community. One thing we have done to help this is to set up a NICU research tent at the Stroll for Strong Kids to present study information there.

Scorsone: And we also have high visibility in the NICU itself. We make sure the research team is down there, and we’re talking to families all the time – not just showing up when we need a blood draw. The idea is these people aren’t just subjects. We’re creating ties, which is what Ann had talked to us about – shaping the culture. So we present research to the staff down there, and we’ve identified nurse champions that are interested in research and want to help us. And they’ve really embraced it, because I think they can see the difference.

What other programs have you used through the CTSI?

Scorsone: I’ve been to Adam Tatro’s eRecord training, and he very graciously asked me to be part of his eRecord leadership group, so I gave a couple presentations as well. He’s extraordinary. We’ve actually had him come here and give our coordinators a private workshop because we do so much data extraction for all of our studies.

Werner: We’re working with Adam on i2b2 as well, and we’ve leaned on the CTSI for REDCap support. I have Amanda Davin on my speed dial. I also like many of the seminars that are run over there – I’ve learned a lot from those.

Have you used the Research Request Dashboard?

Scorsone: Yes. Dr. Patricia Chess was thinking about doing a pilot study of a device. There was a company potentially interested in potentially buying the patent. So that involved some techie licensing stuff that goes way beyond my coordinator role. But through the dashboard, I was just able to write “Hey, I have an investigator who wants to do this,” and they connected me with Joan Adamo.

So that was really neat, they’re able to connect you with all these resources in-house with the click of a button, and I didn’t have to struggle to figure out those protocols myself.