Book Release: Chasing My Cure

We are excited that Chasing My Cure: A Doctor’s Race to Turn Hope Into Action is NOW AVAILABLE everywhere books are sold! The University of Pennsylvania’s Dr. David Fajgenbaum, Pulse Infoframe friend and collaborator and principal investigator of the ACCELERATE registry, wrote Chasing My Cure to share lessons learned about living after nearly dying, and about identifying a treatment that is saving his life and holds great promise for others living with Castleman disease. It’s a story about getting up and fighting back after life knocks us down. And it’s an important opportunity to accelerate the fight against Castleman disease.

Dr. Femida Gwadry-Sridhar (L), Dr. David Fajgenbaum, and Global Genes' Meredith Cagle at the Global Genes Rare Patient Advocacy Summit Dr. Femida Gwadry-Sridhar (L) is with Dr. David Fajgenbaum and Global Genes’ Meredith Cagle at the Global Genes Rare Patient Advocacy Summit in San Diego in September.

This story first appeared in our October 2019 newsletter. Get Pulse Infoframe news delivered to your inbox. Email us to sign up today.

Pulse Infoframe to Develop With National Kidney Foundation First-Ever Patient Registry for Chronic Kidney Disease

National Kidney Foundation logoRecently, the National Kidney Foundation announced its intent to develop the first-ever patient registry for chronic kidney disease. Below, Pulse Infoframe CEO Dr. Femida Gwadry-Sridhar interviews the National Kidney Foundation’s Chief Scientific Officer, Dr. Kerry Willis.

Femida: The National Kidney Foundation (NKF) is building the first national chronic kidney disease (CKD) patient registry ever. What inspired you to take this decision, and what does NKF want to accomplish?

Kerry: CKD is a silent disease, which often does not manifest symptoms until soon before the development of kidney failure. In the United States, 37 million adults are estimated to have CKD, and most aren’t aware of it. One in three American adults are at risk for CKD. Risk factors include diabetes, high blood pressure, heart disease, obesity and family history. There is no doubt, CKD is a public health problem and a source of suffering and poor quality of life for those afflicted. Through the NKF Patient Network, our aim is to ameliorate this public health problem, relieve suffering and improve lives.

Even patients who might have been told they have the disease are usually not aware of the significance of it or what can be done to prevent development of kidney failure and avoid complications.

For the first time, through the NKF Patient Network, there will be a comprehensive collection of patient data which will enable better design of patient education resources, more targeted care, and more patient-centered clinical trials to discover new treatments for the disease. There is no other kidney disease registry in the world that combines patient-entered data with data from electronic health records. This pivotal combination will provide us with a 360-degree view of the patient we are working to help.

We have labeled this robust national registry the NKF Patient Network and are delighted to report that foundational support for the NKF Patient Network was provided through a collaboration with Bayer AG, which shares our goal of improving outcomes for people living with chronic kidney disease.

Femida: So, the NKF Patient Network is for public good in awareness and research. Is that right?

Kerry: Yes, NKF is the nation’s largest organization dedicated to preventing and treating kidney disease and is a lifeline for all people affected by kidney disease. As pioneers of scientific research and innovation, we focus on the whole patient through the lens of kidney health. We are relentless in our mission to enhance lives through action, education and accelerating change. The NKF Patient Network is a logical and needed resource in the fight to overcome CKD and bringing it forth is core to NKF, its mission and values.

Femida: For the benefit of our readers, can you summarize the overall goal of the NKF Patient Network?

Kerry: The overall goal of the NKF Patient Network is to create an interactive community of patients throughout the continuum of chronic kidney disease that links patient-entered data with objective data from electronic health records. This will enable individualized educational resources, research, clinical care and health policy decisions to be centered on patient perceptions, priorities and activities and ultimately improve patient outcomes and patients’ experience with their disease.

Femida: Can you provide an example of a specific project that could be undertaken to achieve NKF’s goal?

Kerry: Yes. We want to provide patient education and support, individualized to patients’ stage of disease and related health conditions. The way we will achieve this is to improve patients’ health literacy related to chronic kidney disease by using state-of-the-art technologies to individualize the content and delivery.

Femida: This is encouraging, given that health literacy is such an important factor to consider in evaluating access to care, adherence to treatments and overall health. Are there are other focus areas that you would like to share? 

Kerry: Yes. We want to create a robust database of patient perceptions, priorities and activities that will facilitate research, clinical care and policy decisions to improve patients’ experience and outcomes. The NKF Patient Network will improve understanding of epidemiology and costs of chronic kidney disease particularly as related to patient reported activities, such as impact of medication compliance, and nutritional and lifestyle modification on CKD progression.

Femida: Can you describe the success criteria that you have established for the NKF Patient Network?

Kerry: The success of the NKF Patient Network program will be gauged primarily in terms of level of patient participation and on-going “engagement” by all stakeholders. Regular use of the NKF Patient Network features by patients, caregivers, researchers, advocates, partners and public health officials is powerful evidence of success. A second level of success will be reflected in the volume of scientific papers published using NKF Patient Registry data.

Femida: This is terrific! Like the National Kidney Foundation, Pulse Infoframe is mission driven. As your partner and platform provider, we are deeply committed to the leadership path that you have laid out to advance CKD research, improve lives and relieve suffering. Your collaborative process designed to engage all stakeholders is one that we also utilize to build cohesive ecosystems with common goal focus.

Kerry: Success is rooted in an enduring commitment of service to others and, through the power of technology, breaking down barriers and enabling new avenues of collaboration. Pulse Infoframe’s real-world evidence platform, healthieTM, is an essential, powerful and easy-to-use resource enabling connectivity across NKF stakeholder communities and creating the opportunity to share knowledge and inform new therapies.

Femida: Are you looking for other patients, caregivers, researchers, advocates and policy makers to join you in your network?

Kerry: Yes, indeed. We are committed to developing the NKF Patient Network fully and making it into a powerful, easy-to-use, online platform of service to generations of stakeholders–patients, caregivers, researchers, advocates, partners and public health officials alike. Dr. Lesley Inker, MD, Associate Professor of Medicine at Tufts University School of Medicine and Director of the Kidney and Blood Pressure Center at Tufts Medical Center, chairs the NKF Patient Network Steering Committee. Very soon, we will engage in a feasibility study to test the NKF Patient Network linkage to the electronic health record system on a large scale, via a health system partnership. To all stakeholders who, like us, are committed to serving the CKD community to advance care and improve lives, we are interested in collaborations.

This story first appeared in our October 2019 newsletter. Get Pulse Infoframe news delivered to your inbox. Email us to sign up today.

Pulse Infoframe’s Conference Update July-November 2019

In July, Pulse Infoframe CEO Dr. Femida Gwadry-Sridhar chaired the 10th Annual Orphan Drugs & Rare Diseases – West Coast Conference in San Francisco and delivered a keynote talk on the role of real-world evidence and natural history studies in targeting better drug development.

In September, Femida participated in the EveryLife Foundation Rare Disease Scientific Workshop in Washington, DC; chaired the 11th Annual Orphan and Drugs and Rare Diseases – East Coast conference in Boston, where she delivered a keynote and led a workshop titled “Opportunity for Real-World Evidence in Improving Patient Outcomes”; presented at the Rare Fair virtual conference, and presented a poster at the ESMO Congress in Spain.

Pulse Infoframe will be at the Society for Participatory Medicine and the Connected Health conferences in Boston and the 9th annual SMi Annual Conference on Orphan Drugs and Rare Diseases in London in October. In November, you will find us at the CDKL5 Annual Forum in Boston and the World Orphan and Rare Disease Europe conference, and in December at BioData (Europe).

Dr. Marcus Butler and Dr. Femida Gwadry-Sridhar presenting their poster in Spain Dr. Marcus Butler and Dr. Femida Gwadry-Sridhar presenting their poster, “Opportunity for Real-World Evidence in Improving Patient Outcomes,” in Spain.

This story first appeared in our October 2019 newsletter. Get Pulse Infoframe news delivered to your inbox. Email us to sign up today.

Immunocore and Pulse Infoframe, Inc. Partner with Leading Academic Institutions to Launch First Global Patient Registry for Uveal Melanoma

Patient-reported data will help inform research in rare form of eye cancer

Immunocore Limited, a leading T cell receptor biotechnology company, and Pulse Infoframe, Inc. (Pulse), a data aggregation and analytics company, today announce plans to support the first global patient registry in uveal melanoma (UM), a rare and aggressive form of melanoma, which affects the eye, typically has a poor prognosis and for which there is no currently accepted optimal management or treatment.1 The insights gained through the academic registry will provide a more comprehensive understanding of the disease and may help to shape the way future research is conducted.

The registry will include institutions from across the US, UK and Australia, and is currently being developed by leaders in the field of uveal melanoma, including:

  • Richard Carvajal, MD, Director of Experimental Therapeutics and Director of the Melanoma Service at Columbia University Medical Center, Columbia University, US
  • Joseph Sacco, PhD, Clinical Senior Lecturer at the University of Liverpool and Honorary Consultant in Medical Oncology at Clatterbridge Cancer Centre, UK
  • Anthony Joshua, MBBS, PhD, Director of Cancer Services at St Vincent’s Hospital and conjoint Associate Professor with the University of New South Wales, Australia

“The rarity of uveal melanoma makes it difficult to collect the data needed to better understand how the disease manifests and evolves, and who is likely to respond to treatment and why,” said Dr. Carvajal. “For the first time we’ll have the opportunity to prospectively collect and analyse global real-world data, including patient-reported outcomes. This will help to guide medical research, innovative trial design and recruitment, potentially paving the way for accelerated treatment advances.”

Research generated from the registry will examine risk factors, genetics, epidemiology, treatment cost-effectiveness and real-world outcomes from a database of patients with uveal melanoma. The goal is to create a benchmark framework, or ecosystem, for collecting and assessing clinical outcomes, as well as providing necessary data for future genetic, sub-phenotype and biomarker research.

“We’re excited to be working with the research community to address the need for a more comprehensive understanding of uveal melanoma,” said Mohammed Dar, MD, Head of Clinical Development and Chief Medical Officer at Immunocore. “We believe that this registry will provide critical insight that may help to advance the development of future treatments, including clinical and genetic information about potential subsets of people living with this devastating disease.”

Enrolment into the registry is expected to begin in August at five sites in the US, three sites in the UK, and three sites in Australia.

“At Pulse, we strive to support the entire ecosystem that researchers, clinicians and patients require to generate the real-world evidence necessary to advance clinical outcomes, support patient advocacy and promote disease awareness,” said Femida Gwadry-Sridhar, RPh, PhD, CEO and Founder at Pulse. “We are pleased to partner with Immunocore and key academic leaders on this patient registry, which will provide a detailed look into uveal melanoma from a global perspective.”


About Uveal Melanoma
Uveal melanoma is a rare and aggressive form of melanoma, which affects the eye, typically has a poor prognosis and for which there is no currently accepted optimal management or treatment.1 Although it is the most common primary intraocular malignancy in adults, the diagnosis is rare, with approximately 8,000 new patients diagnosed globally each year (1,600-2,000 cases/year in the US).1,2,3,4 Up to 50% of people with uveal melanoma will eventually develop metastatic disease.1 When the cancer spreads beyond the eye, only approximately 40% of patients will survive for one year.1

About Immunocore
Immunocore is a leading T cell receptor (TCR) biotechnology company working to create first-in-class biological therapies that have the potential to transform patients’ lives. The Company’s primary therapeutic focus is oncology and it also has programmes in infectious and autoimmune diseases. Immunocore has a pipeline of proprietary and partnered programmes in development. Collaboration partners include Genentech, GlaxoSmithKline, AstraZeneca, Lilly, and the Bill and Melinda Gates Foundation. Immunocore is headquartered at Milton Park, Oxfordshire, UK, with offices in Conshohocken, PA and Rockville, MD, US. The Company is privately held by a broad international investor base. For more information, please visit www.immunocore.com.

About Pulse Infoframe, Inc. (Pulse)
Focusing on rare disease and cancer, Pulse is a new style informatics company delivering real-world insights and precision knowledge through dynamic analytics and data visualization to accelerate time-to-value. Pulse aggregates data, including patient reported outcomes, from multiple sources making it available to researchers and relevant stakeholders and offers numerous benefits including dramatically improved collaboration, informing decision making and leading to advances in treatment. Pulse is headquartered in Canada, with offices in the United States, and the United Kingdom. For more information, please visit www.pulseinfoframe.com.


1 Carvajal, RD, Schwartz, GK, Tezel, T, et al., 2017. Metastatic disease from uveal melanoma: treatment options and future prospects. British Journal of Ophthalmology, 101(1), 38-44.

2 Pandiani C, Béranger GE, Leclerc J, Ballotti R, Bertolotto C. Focus on cutaneous and uveal melanoma specificities. Genes Dev. 2017;31(8):724-743.

3 Jovanovic P, Mihajlovic M, Djordjevic-Jocic J, Vlajkovic S, Cekic S, Stefanovic V. Ocular melanoma: an overview of the current status. Int J Clin Exp Pathol. 2013;6(7):1230-1244.

4 About ocular melanoma. Ocular Melanoma Foundation website. www.ocularmelanoma.org?/about-om.htm. Accessed May 2019.


Immunocore
Louise Conlon, External Affairs and Brand Communications Manager
T: +44 (0) 1235 438600
E: info@immunocore.com
Follow on Twitter: @Immunocore

Syneos Health Communications (Tebentafusp/IMCgp100)
Stephanie Bukantz
T: +973 477 1814
E: ImmunocorePR@syneoshealth.com

Pulse Infoframe
Tamara Howard, PhD, Vice President of Patient Advocacy
T: +888 787 8573
E: thoward@pulseinfoframe.com

Pulse Infoframe Around the World

Here are a few highlights of our travels from the past few months.

Dr. Durhane Wong-Rieger (L) and Dr. Femida Gwadry-Sridhar (R). Dr. Durhane Wong-Rieger (L), President of the Canadian Organization for Rare Disorders (CORD), and our Dr. Femida Gwadry-Sridhar (R).

Pulse Infoframe has just returned from the Great Plains Rare Disease Conference in Sioux Falls, spoken at Patients as Partners in Philadelphia, Clinical Research as a Care Option in Raleigh Durham, the Patient Experience Symposium in Boston, and the Canadian Organization for Rare Disorders Conference in Toronto. Our presentation topics included discussions on real world evidence, patient engagement, and other relevant themes. Now a member of Rare Disease International (RDI), Pulse Infoframe attended RDI’s inaugural rare disease conference at the United Nations in New York, cementing our commitment to rare disease communities globally. In support of our clients everywhere, Pulse Infoframe was in Washington DC for Rare Disease Week, including Rare Disease Day at the NIH, and attended and presented at other events. Look for us at BIO2019 in Philadelphia in June.

Europe

Real World Evidence and Patient Centricity were two highlighted themes in Europe. In March, at the 9th Orphan Drugs and Rare Diseases Global Congress 2019 in London, Femida was a featured speaker during the opening sessions, which focused on macro outlooks and trends, and moderated later sessions on policy framework and collaboration. At the Patients as Partners Conference in London, Dr. Tamara Howard, Pulse VP of Patient Advocacy, presented on technologies and services for reducing the burden for patients and investigators in clinical trials while driving better health outcomes. Femida was also invited to attend a Rare Disease International event at World Health Assembly of the World Health Organization in Geneva.

Australia

There is a lot of interest in Patient Reported Outcomes and Experiences down under. Pulse Infoframe’s PROMs/PREMs offerings played a central role at the annual Patient Experience Symposium 2019 in Sydney, where participants were given a preview of the PROMs/PREMs systems that are being implemented throughout New South Wales Health Services. In the rare cancer space, Dr. Femida Gwadry-Sridhar, Pulse Infoframe Founder and CEO, spoke at Australia’s prestigious Garvan Institute for Medical Research about our new Uveal Registry, for which Australia will be a hub.

This story first appeared in our May 2019 newsletter. Get Pulse Infoframe news delivered to your inbox. Email us to sign up today.

Pulse Infoframe Clients in the News

Several of our clients have celebrated some huge successes this season. Take a look!

Simon’s Heart

Since 2011, Simon’s Heart has advocated for the Sudden Cardiac Arrest Prevention Act. In May, Georgia and West Virginia became the 13th and 14th states, respectively, to pass the Sudden Cardiac Arrest Prevention Act, underscoring the power of data to effect change and improve lives.

Simon's Heart Logo

Orphan Disease Center

On June 6-7, 2019, the Orphan Disease Center (ODC) at the University of Pennsylvania School of Medicine, in partnership with Global Genes, will host the annual RARE Drug Development Symposium, designed to connect, educate, and inspire rare advocates. The Symposium focuses on the drug development process and the role of rare disease advocates.

And a special congratulations to Ashley Winslow, PhD, Senior Director, Portfolio Research and Development at ODC, on the birth of her baby girl!

Orphan Disease Center Logo

Bowel Cancer Australia

Hot off the press! Bowel Cancer Australia is a nonprofit advocacy organization focused on supporting patients and increasing public awareness and screening throughout Australia. Its marketing campaign has won a Siren Award for an innovative and engaging public service radio campaign. Bowel cancer is the second largest fatal cancer in Australia.

Bowel Cancer Australia Logo

This story first appeared in our May 2019 newsletter. Get Pulse Infoframe news delivered to your inbox. Email us to sign up today.

Pulse Infoframe Welcomes New Staff

Our staff has grown in recent months as we help more organizations use real world evidence to find effective treatments for rare diseases.

Paul Ferraiolo: Chief Innovation Officer

Paul brings over 30 years’ experience to Pulse Infoframe. His previous experience includes

  • Chief Architect of the Oracle Cancer Research Cloud initiative,
  • Chief Technology Officer at N-of-One, an industry leader in delivering high quality clinical content to molecular diagnostic labs and large healthcare provider groups, and
  • Director of Informatics in the Broad Institute’s Chemical Biology Program, where he held a joint appointment at both Harvard and MIT.

Denise Redkar-Brown, MT: Senior Clinical Data Management and Training

Denise began her career as a medical technologist working in a hospital laboratory environment.

  • Denise has held positions in basic and clinical research and facilitated training for over 20 years.
  • She is published in the European Journal of Pharmacology and the Good Clinical Practices Journal.
  • She is a chapter coauthor of the Society of Clinical Data Management’s Good Clinical Data Management Practices publication and author of Barnett International Good Clinical Practices Question and Answer publication.

Brian Davis, PhD: Program Manager

Brian holds a Biochemistry PhD and has held numerous executive positions. His career highlights:

  • Director of Database Development at Proteome, Inc., where he led a group of over 200 PhD scientists and software developers in curating structured and unstructured information.
  • Director of Government Contracts for 3rd Millennium, Inc., where he led a group of cancer center researchers at the National Cancer Institute (NCI) in developing semantic and syntactic standards to be used among the NCI cancer centers. 

We’re excited to welcome our new staff and look forward to working with them. This story first appeared in our May 2019 newsletter. Get Pulse Infoframe news delivered to your inbox. Email us to sign up today.

How Pulse Infoframe’s Newest Customers Collect Real World Evidence (RWE)

Our newest customers provide further examples of how real world evidence (RWE) in healthcare is used.

National Kidney Foundation Patient Network

The National Kidney Foundation just announced the first-ever interactive patient registry community for chronic kidney disease. Patients will enter data on their own health history, outcomes, and preferences. These data will be linked with clinical and laboratory data from electronic health records to help deliver individualized educational resources, research, clinical care insights, and health policy decisions centered on the patient. You can learn more here.

National Kidney Foundation Logo

Uveal Melanoma Registry

This is the first-of-its-kind, global registry to use real RWE in the discovery of new treatments for uveal melanoma, a rare cancer of the eye. This initial rollout is supported by Immunocore, and project collaborators include New York’s Columbia University, Australia’s St. Vincent’s Hospital, and the UK’s University of Liverpool.

Pan-Canadian Lung Cancer Observational Study Registry

Shortened to PALEOS, this registry will help researchers and health care professionals understand the natural history of lung cancer rare molecular alterations/subtypes, generate RWE for these forms of cancer, and help distinguish between them. This information will be invaluable in the discovery of new treatments.

Agency for Clinical Innovation (ACI), NSW Health

Raj Verma, ACI’s Executive Director System Transformation, Evaluation and Patient Experience, talked about the HOPE System, which is the Pulse PROMs and PREMs implementation in New South Wales (NSW) Health, at the ICHOM Value Based Health Care conference held in Rotterdam earlier this month. Melissa Tinsley, ACI’s Health Outcomes Manager, delivered a half-day workshop focused on the HOPE System to health care professionals in April.

Agency for Clinical Innovation (ACI), NSW Health Logo

To learn more about how companies and organizations around the world are using real world evidence in healthcare, contact us.

This story first appeared in our May 2019 newsletter. Get Pulse Infoframe news delivered to your inbox. Email us to sign up today.

National Kidney Foundation to Develop First-Ever Patient Registry for Chronic Kidney Disease

Pulse Infoframe joins forces with National Kidney Foundation to develop the NKF Network, a powerful new resource poised to spur breakthrough collaboration and improve the quality of people’s lives. The NKF Network is the first-ever national registry for patients at all stages of chronic kidney disease.  You can learn more here.

 

6th Annual Patients as Partners US Conference – Collaboration in Action

by Joe Ternullo

Patients as Partners conferences are the only conferences in the US and Europe dedicated to demonstrating how to systematically involve patients throughout the entire drug development life cycle. They aim to improve efficiency in clinical research and speed lifesaving, quality-of-life-improving therapies to those in need. Dr. Femida Gwadry-Sridhar and I recently returned from 6th annual Patients as Partners US conference in Philadelphia in March.

Collaboration and Efficiency Lead to Faster Treatments

Collaboration and efficiency are at the center of Pulse’s mission. That’s why it was so important for Pulse to participate in both conferences – our colleague, Dr. Tamara Howard presented at Patients as Partners EU. Networking is critical in the medical field to stay on top of the latest research, talk to a wide range of people, and exchange new ideas. At Patients as Partners,  we connected with patients, advocates, industry representatives, academic researchers, government officials, and non-profit organizations.

Patients as Partners US enjoyed a capacity, standing-room-only crowd. The collegial and engaging esprit de corps among all participants was apparent. Listening to one solid speaker after another, whose stories stayed with me, helped clarify that something was different—there was a bigger picture that everyone was aligned and working  towards—real progress was afoot.

A Few Highlights from Patients as Partners US

Judy Perkin’s Immunotherapy Trial: A Cancer Veteran’s Remarkable Story

Who

  • Judy Perkins, Metastatic, Breast Cancer Veteran and Patient Advocate

What

Judy shared her remarkable 16-year journey battling breast cancer and the success that resulted upon enrolling in an immunotherapy clinical trial at the National Cancer Institute. Within six months of beginning immunotherapy, Judy had been cleared of all cancer. In fact, she’s the first person to be declared free of all metastatic cancer after a course of immunotherapy. Judy’s story was gripping, relevant and an inspirational patient engagement message. She is the first of many, many more to come.  The future is now.

Appraising Initiatives to Raise Public and Patient Awareness and Education

Who

  • Ken Getz, MBA, Director and Associate Professor of Tufts Center for the Study of Drug Development and Founder and Board Chair of the Center for Information and Study on Clinical Research Participation

What

Ken reviewed global initiatives to educate the public and patients and to engage them as partners in the clinical research process. Ken highlighted  15 years of progress and educational excellence in this informative and comprehensive keynote address that ran the gamut of a broad cross section of educational programs and services, media outreach, awareness campaigns, and plain language clinical trial result summaries. This remarkable resource—at once pointing the way forwarding, making things happen, and catalouging results—is so essential to the advancement of the patients-as-partners movement.

FDA Patient Engagement Synergistic Efforts

Who

  • Anindita Saha, Director of Clinical Expertise and Partnerships, FDA Center for Devices and Radiological Health
  • Michelle Tarver, MD, PhD, Director of Patient Science & Engagement, FDA Center for Devices and Radiological Health
  • Megan Moncur MS, Senior Advisor for the Science of Patient Input at the FDA Center for Biologics Evaluation and Research
  • Pujita Vaidya, Senior Advisor for Patient-Focused Drug Development Program and the FDA Office for the Center Director

What

This panel discussion focused on the FDA’s efforts to fully integrate the patient voice in all aspects of drug development. In summary, the FDA is systematically working to help ensure that patients’ experiences, perspectives, needs and priorities are captured and meaningfully incorporated into the development and evaluation of medical products throughout the medical product life cycle. These are committed and engaged people who are going to make it happen!

Do You Advocate for Patients? Work with Patients?

With its welcoming and committed community of interest and chock-full of high-value content, Patients as Partners is a must-attend event. Pulse Infoframe will return to Patients as Partners in 2020. Let’s not wait until then to talk. I will be at Clinical Research as a Care Option in Raleigh Durham in April. Femida and I will be at the Great Plains Rare Disease Conference in May. If you attend any of these events, look for us (or, better yet, email us). Let’s see how we can help you.

Joe Ternullo is the head of business development for Pulse Infoframe, a member of NQRN Advisory Committee and Co-Chair of the Society for Participatory Medicine

About Pulse Infoframe Inc.
Focusing on rare disease, cancer and patient reported outcomes, Pulse Infoframe, a new style health informatics company, delivers real-time analytics and visualization to improve outcomes, generate real-world evidence, and provide data insights and precision knowledge. Pulse aggregates data from multiple sources, making it available to relevant stakeholders and offering numerous benefits including dramatically improved efficiency, productivity, and collaboration. Pulse Infoframe is headquartered in Canada, with offices in the United States, and India.

More information is available at www.pulseinfoframe.com