CARRA Newsletter-July 2018 Issue 1


What the Heck is Informatics?

Jonathan Hausmann, MD
Boston Children’s Hospital

My mom likes to tell the story of when I was a little kid and she took me to a pharmacy. While she was shopping, I opened a box of thermometer strips and had managed to stick one on my forehead. Apparently, I was really proud of my achievement, although my mom didn’t appreciate the ripped cardboard box and torn instruction papers that I had left on the ground.

Thirty years later my mom would argue that not much has changed. I still get very excited about exploring new technologies (wearable thermometers), I’m very much interested in temperatures in health and disease (autoinflammatory diseases), and I sometimes still leave a mess behind.

It is this curiosity and my desire to leverage technology to improve health that led me to apply to CARRA’s Informatics Internship. This two-year internship was crafted to develop independently-funded informaticians (yes, that’s a word!) within CARRA to help to lead, develop, manage, and analyze an increasingly complex ‘dataverse’ in pediatric rheumatology, with a focus on applying efforts and expertise to CARRA-wide projects such as the CARRA registry.

An important part of the internship was designing an educational curriculum that meets my needs. I first wanted a global introduction to informatics, so I chose to take an online course called Introduction to Biomedical and Health Informatics by Oregon Health & Science University. This is part of the American Medical Informatics Association’s 10x10 Courses, which aim to train 10,000 health care professionals in informatics within 10 years. They offer a wide variety of online informatics courses, everything from Pharmacogenomics to Healthcare Interface Design.

In this Issue...

What the Heck is Informatics?

Welcome CARRA's New Hire!

CARRA at ACR 2018

Biostatistics Support Grants

Fall 2018 Grant Cycle

Registry Update

CARRA Registry Newsletter

CARRA Registry Associate-RFA


Upcoming Dates

Arthritis Foundation Update

 Although I had experience in developing technology to explore health and disease, I didn’t know much about the field of informatics before my internship. In my first course, I learned that informatics is the discipline focused on “the acquisition, storage, and use of information in a specific setting or domain.” Informatics is not specific to the healthcare field and is applied to many other fields as well (insert your favorite prefix in front of informatics). The general field of informatics in medicine is sometimes referred to as “biomedical and health informatics,” (BHI) whose goal is to improve human health and the delivery of healthcare services.

The field of informatics lies at the intersection of people, technology, science, and information. Although many assume that the goal of informatics is to develop technological tools, the technology is only the means to achieve a specific goal, not the goal itself. There is a fundamental theorem in informatics that states the goal of informatics is to use technology to help people do cognitive tasks better than they would on their own, rather than building systems to replace human expertise.

BHI itself is made up of several sub-specialties. Bioinformatics is the use of informatics to better understand the work of genes, proteins, and cells. Imaging informatics applies informatics principles to store and retrieve images in the healthcare setting. Research informatics uses informatics to facilitate research. Clinical informatics helps physicians to deliver patient care, primarily through the electronic health records (EHR), which is a central component of BHI. Clinical research informatics utilizes information related to clinical trials and to secondary research use of clinical data to discover and manage new knowledge.

Informatics came to a turning point with Obama’s American Recovery and Reinvestment Act (ARRA) of 2009, a federal stimulus package designed to improve healthcare quality and safety and reduce costs by encouraging adoption of EHR. Physician offices and hospitals were given incentives for employing the “meaningful use” of EHRs that had various properties, including the ability for computerized provider order entry, clinical decision support, e-prescription, maintaining an updated medication list, allowing patients electronic access to their data, and allowing the exchange of information between healthcare systems.

Some say that the ultimate goal of EHR is what is called the “learning health system” in which the data entered into the system is continuously analyzed and used to advance medical knowledge and improve the care of future patients. In theory, this would mean that every child with a rheumatic disease would automatically contribute their clinical data to enhance our understanding of rheumatic diseases. That is, the research aspect of what CARRA does would be seamlessly integrated into the delivery of patient care.

Almost 10 years after ARRA, we are all enjoying the fruits of this investment with state-of-the-art EHRs that easily allow the exchange of medical information between healthcare systems, provide you only with the information you need, allow you to focus the attention on the patient instead of the computer, reduce clinician time burdens, and contribute to your wellness.

Well, not exactly. But most physicians do agree that EHRs have improved clinical care, although there’s a long way to go to accomplish the ONC’s (White House Office of National Coordinator’s) vision of enhancing the quality, safety, and reducing cost.

Fortunately, better times may lie ahead. There is a new push to develop FHIR (Fast Healthcare Interoperability Resources), a standard for exchanging health information electronically. This would allow developers to create apps to access a patient’s medical data, rather than having a monolith EHR that is the same for every user. This approach is called SMART on FHIR.  For instance, when you see a patient in your rheumatology clinic, you could access their chart from the Rheumatology App, which would display only information relevant to a rheumatologist (e.g., hand x-rays, appropriate labs, immunization history, active rheumatic medications, etc.). It would also easily allow you to add to the medical record quickly and efficiently by having rheumatology-specific templates such as the joint exam.

This same process could allow patients to access their data. For instance, through the Health app, Apple developed the ability for patients to view and download their medical records from various providers onto their phone, including laboratory results, medications, procedures, and vital signs. Patients will also be able to enter their own data into the app, including patient-reported outcomes (PROs), as well as data automatically collected from various sensors including the iPhone (steps), smartwatches (heart rate), Bluetooth-enabled thermometers, scales, and blood pressure cuffs, among others. In the future, this data will automatically be uploaded onto a patient’s EHR.

My particular project for my CARRA Informatics Internship involves exploring the use of health-related social media by parents of children with rheumatic diseases. I am also hoping to improve the long-term follow-up of patients in the CARRA registry that “graduate” from pediatric practices or are lost to follow-up. I think that some of these participants would prefer texting or using their smartphones to answer surveys, rather than talking with an interviewer over the phone.

One of the significant challenges that lies ahead is how to make sense of all the data being collected. This “big data” is thought to have five attributes, including:

  • Volume (2.5 quintillion bytes of data are created daily)
  • Velocity (it is collected and exchanged very quickly)
  • Variety (data is diverse and received from multiple sources including genome studies, proteomics, pedometers, smartwatches, and even social media)
  • Variability (the meaning and interpretation of data is highly variable depending on the source)
  • Value (it has the potential to deliver very useful information)

To be better able to analyze this data, I’m taking a series of courses on Data Science by Johns Hopkins University, which are offered online through Coursera.

The challenge will be transforming all this data (the raw material) into information (giving it meaning and organization), knowledge (providing understanding and applicability), and wisdom (knowing when and how to apply the knowledge). Informaticians will be ideally situated to help make this happen, and as the CARRA Informatics Intern, I want to be a part of it!

Welcome to CARRA’s new Director of Strategic Partnerships and Patient Engagement!

It is with great pleasure that the CARRA Board of Directors and Steering Committee announce the recruitment of Vincent del Gaizo as CARRA Director of Strategic Partnerships and Patient Engagement. We are excited to have Vincent join us and look forward to his participating full-time as CARRA expands its engagement of patients and caregivers in our research efforts and works to build and improve relationships with an expanding spectrum of partners and stakeholders.

As you are all aware, over the past 5 years CARRA has increasingly worked to engage patients/parents in research - both within our annual meeting and workgroup structures and more recently in broader scale clinical trial design and strategic planning activities. To date, these goals have been accomplished through a combination of volunteer efforts and coordination with partners/stakeholders such as the Arthritis Foundation, but the scale and complexity of these activities have exceeded the support provided by our current administrative structure. Along similar lines, the Executive Committee has identified significant gaps in our communications support with regard to creation of patient/parent-facing research materials and translating CARRA activities and research results into lay content for our newsletter and website, and for sharing with the Arthritis Foundation and other partners to support advocacy and fundraising efforts.

In consideration of how to support these needs, we reviewed the spectrum of activities CARRA has been engaged in within the past few years and projected future needs to create a position within CARRA of Director of Strategic Partnerships and Patient Engagement. Upon consideration by the Board of Directors, and in discussion with the Arthritis Foundation and other strategic partners, we offered the role to Vincent Del Gaizo and he has accepted.

As most of you are aware, Vincent is the parent of a child with systemic-onset JIA who has been active in supporting CARRA and CARRA-research activities since the early days of our existence and a tireless advocate of the CARRA mission and vision.  Indeed, a large part of our success to date in patient/parent engagement has been through his efforts. Additionally, Vincent has developed significant expertise and experience through his work with CARRA on multiple projects around patient/family centered research and engagement, which would be very difficult to replace. He has essentially almost single-handedly led the entirety of the CARRA patient/parent engagement processes. This experience led to him being named as co-chair of the PCORI Rare Diseases Panel, on which he served for more than 2 years. Recently, he was asked to serve on the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Advisory Council by Dr. Steve Katz, the Director of NIAMS. His insights and ideas in multiple CARRA research projects and external partnerships, including with the Arthritis Foundation, have been invaluable.

Please join us in welcoming Vincent into his new role. There is no doubt he will bring new energy to our efforts in patient engagement.

CARRA Activities at ACR 2018 – Save the Date

Join CARRA in Chicago during the 2018 ACR/ARHP Annual Meeting. CARRA has secured space at the Hyatt Regency McCormick Place for a CARRA meeting and a reception co-sponsored by the Arthritis Foundation.

CARRA Meeting
Monday, October 22
6:30-7:30 pm

CARRA-Arthritis Foundation Reception
Monday, October 22
7:30-10:00 pm

Be sure to mark your calendars!

CARRA-Arthritis Foundation Publication Support Grant has been Renamed Biostatistics Support Grant

CARRA has changed the name of the Publication Support Grant to the Biostatistics Support Grant as a better representation of what this funding mechanism offers to investigators.  This grant is intended to assist CARRA investigators with projects in need of support for the analyses of existing CARRA-related datasets.  The investigator should have the data in hand at the time of the application submission.  Limited funds (up to $10,000 in total costs) may be requested to complete a fixed set of tasks that will result in publication of results within 6 months. It is anticipated that funds will be used for statistician effort/fee for service to support database cleaning and/or statistical analyses. Applications are accepted on a rolling basis until 5 have been awarded each year.

Fall 2018 CARRA-Arthritis Foundation Grant Cycle to Open Soon!

Applications for both Large Grants and Small Grants will be due October 1. LOI’s are required for those submitting Large Grants (only) and are due September 1. To be eligible to apply, the project PI for all grants must be a current CARRA member who is up-to-date on membership dues and membership information (location, contact information, and membership status) is up-to-date. Fellows, residents, and CARRA Executive Committee members are not eligible. For more information, including details on what information needs to be included in a large grant LOI, please review the information posted on the CARRA website for each grant type.

Grant Deadlines
Large Grant Letter of Intent (LOI) due: September 1
Large Grant Applications Due: October 1
Small Grant Applications Due: October 1

Registry Announcements

Kudos to our CARRA Registry Sites who met the June 30, 2018 Data Harvest Deadline

A big thank you to the Registry sites who were able to successfully get their data entries clean and complete by the June 30 data harvest deadline. Thank you all for your hard work and dedication to the CARRA Registry. Please continue your hard work in getting all data entered and staying up to date on data entry. The next data harvest is December 31, 2018.

STOP-JIA Enrollment Extended

STOP-JIA enrollment has been extended until we reach 400 patients. Currently, 385 patients have been enrolled. Please continue to screen all new untreated pJIA subjects. Once we reach 400 subjects, we will close enrollment. Thank you for your hard work in achieving this goal!

Enrollment Update (as of 7/13/18)

The Latest CARRA Registry Newsletter is Now Available!

Check out the CARRA Registry Newsletter! This newsletter was created to keep families informed of all the latest happenings in the CARRA Registry, STOP-JIA and FROST studies. New issues will be published quarterly and posted on the CARRA website at Or, you (and your patients) can sign up to receive new issues via email. To sign up, please fill out the subscription form using the subscribe button below.

CARRA Registry Associate – RFA

Applications Due: August 15
Term: October 1, 2018 – June 30, 2020

CARRA is now accepting applications for a CARRA Registry Associate position. The position will support 15% effort for 21 months using funds received via our partnership with the Arthritis Foundation.

The CARRA Registry Associate will:

  • Serve as liaison between DCRI and the CARRA SLE and JDM groups regarding Registry enrollment, data monitoring, and facilitate data acquisition and facilitate abstract and manuscript preparation.
  • Provide oversight of and mentorship to CARRA Registry interns
  • Actively participate in weekly Registry Operations team calls (Mondays at 11:00am ET), bi-weekly Registry Intern conference calls, and occasional colloquia or program workshops.
  • Work with the CARRA Registry Scientific Director (Tim Beukelman), the Registry PI’s (Yukiko Kimura and Laura Schanberg), and the Director of Research Operations (Miranda Wenzlaff).
  • Attend the CARRA Annual Meeting and Operations Team Retreat, as well as any additional meetings involving the CARRA Registry.

Applicants must be current CARRA members, have completed a pediatric rheumatology fellowship and be employed as a pediatric rheumatologist in the United States or Canada. Prior experience with the CARRA Registry is required. Prior experience as a CARRA Registry intern is desirable.

LFA-CARRA Childhood Lupus Research Prioritization Survey

CARRA Members – Your input is Needed!

Please take 5-10 minutes to take part in the LFA-CARRA Childhood Lupus Research Prioritization Survey. The goal is to form consensus around research topics, and that requires full participation!

If you feel you do not have sufficient expertise in childhood lupus, you can indicate that in the very first question without needing to respond to additional questions.

The results of this survey will play a significant role in informing future LFA research funding opportunities; make sure your voice is heard!

Take the survey today!

Important Upcoming Dates

Arthritis Foundation Updates


JA Camp Registration Still Open

Registration for some of our 201 camp programs is still open! View our brand-new JA Camps website to browse our camps and register today! If you have additional questions, please contact your nearest Arthritis Foundation office.

Research Patient Engagement Videos – Now Available

Thanks to a two-year Patient Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award, the Arthritis Foundation has created a series of educational videos to help make patients and families aware of the opportunities available through involvement in research, whether as patient participants or as patient/family partners.

The curriculum was developed with clinicians, researchers, patient/families and presented during the parent program sessions at both Juvenile Arthritis Conference’s in 2016 and 2017 and was refined based on attendee feedback. The PCORI award enabled additional travel scholarships for 56 eligible families to attend the 2016 and 2017 JA conferences and participate in the research session, “Research: There’s a Role for You!” where the training was presented.

As a final product, a video based on the co-produced curriculum was created that can now be disseminated more widely to educate and empower patients/families to become involved in research.

View the videos