Registry Management for TRxansitions

The Team

Guilherme Berger

Lead Developer
(919) 593-7618

Tony Bo

Project Manager
(704) 281-4633

Stephanie Fenton

Editor & Client Manager
(919) 619-8872

The Clients

Maria Ferris

Project Coordinator
(919) 966-4996

Kristi Bickford

Adolescent Transition Coordinator
(919) 966-2561

Mark Moultry

Development Mentor
(919) 843-6151


The goal of our project is to create a secure, online registry where a user could enter in a patient’s identifier (either name or unique number) and it would generate a list of studies that the patient is involved in, or is planned to be involved in. It would also provide a way to manage patients that are enrolled or are eligible to be enrolled in various studies.

Currently the UNC Kidney Center has around 500 patients in their database. They are encountering issues regarding inconsistent and lost patient and study data. This new registry would provide easy and organization in terms of keeping studies and patients up to date and on schedule.

User Stories

I am Dr. X, a provider. I have a busy clinic day and want to see which of my patients are enrolled in the Transition study, and what data is on file for them. I log into the Registry and type in the patient’s name and date of birth. A page pops up that has the Patient’s name and demographic information in front of me, and two buttons to click: “Studies” and “Surveys”. I click on “Studies” to get a list and description of all the studies the patient is enrolled in. I click “Surveys” to see which specific surveys this patient has completed. I also really want to know how one of my patient did on their last Transition Scale survey. I click on that survey and can click a button “Print report” to print a report of that survey.

I am Researcher Y, a research coordinator. I want to enroll a new patient in the study. Somewhere there is a button that says “New Patient”, and I get a form where I can enter in their basic information, as well as the patient’s answers to the surveys I administered. I also will specify when this patient needs a follow-up, in this case it is 6 months. 5.5. months later, I am alerted (via a calendar, email or alert when I log into the Registry) that there is a patient who is due a follow-up in two weeks.

I am Researcher Z, the statistics person getting ready for data analysis. I want to see what my sample size is, so I want to see all of the patients that are in the study. Somewhere there is a button that says “Patient List” and I get to see a table that has the name of the patient, their basic information, a list of studies they are enrolled in and a list of surveys they have completed. I want to be able to download this table into an excel sheet.


Camila Lauren

Camila is a clinician at the UNC Kidney Center. She is very focused on her work and has a busy schedule.

She only uses computers when it’s absolutely necessary, like for managing the patients on a medical program. Because of this, she has very little computer experience. Learning how to use new applications cannot be time-consuming, as time is a critical resource for her. Because of this, she gets very frustrated with unintuitive technology.

That’s why whenever I log in, I want the screen to be right where I need to be - that is, if I’m always logging in and going to the patient section, I don’t want to be redirected to a home screen instead of being brought to my patients page.

She likes animals, loves her husband, and they have two toddlers together, with whom she spends all her free time with.

Michael Kurt

Michael is a young researcher at the UNC Kidney Center. Because he uses the computer as a tool in his research projects, he is very experienced with all different kinds of application. Whenever he is stuck on new software, he consults the documentation, tutorial or FAQs.

Therefore, if he’s lost at how to do something like filtering out patients for the ones he’s searching for, a page that explains how he can do that would be extremely helpful.

Having experience as a TA, he also finds it easy to guide other people navigating computer software.

He is single, likes exercising and playing videogames in his gaming laptop.

John Douglas

John is a statistician at the UNC Kidney Center. He’s used to working with technology since he needs to use various programs and applications when working with all the data that the Kidney Center provides. However, as a statistician only, he doesn’t need the ability to edit or modify patient information, or even add new studies or surveys.

What would work best for John is something similar to that of a “read-only” mode, so that he can access and download patient, study, or survey data (possibly Excel) so he can use it for his work. He wouldn’t be able to accidentally modify information so that the database can stay accurate with data.

He is happily married and likes to fish in his downtime.

Use Cases


  • To log in and access patient pages
    • User logs in upon loading the website. If the login is successful, they are brought to a page that displays their patients.
    • If login is unsuccessful, error appears and the user has another chance to log in.
    • Once logged in, user is automatically brought to patient page. There, the user may click on the names of each patient to see the patient’s information page.
    • If the clinician wishes to view a patient who is not part of their patients, they may use a search bar present at the top of the patient page where they may type in their name, or they may click on a link that states “All Patients”, which will bring them to a page that lists all the patients that are a part of the Kidney Center, and they may search for the patient there.
  • Viewing patient pages
    • Clicking on a patient’s name will bring up their “page”. Each patient’s page holds information specific to that patient, like their date of birth, name, and which studies and surveys they are enrolled in. A brief history of past studies and surveys would also be displayed on their page. A clinician will be able to edit information about the patient by clicking various “edit” buttons on the information for the patient.
  • Viewing studies and surveys
    • Not only will there be a link on the main navigation (links for patients, surveys, and studies), but if a user is looking at a patient’s page, they will be able to click on a survey and be brough to that specific survey’s page, where a list of all participating patients will be located as well as information on the survey itself.

Research Coordinator

  • Logging in
    • Will be the same as the clinician’s log in, where after a successful log in they are brought to a page that shows their patients that they have been keeping track of with surveys
  • To add new patients
    • Clicking on the link for all patients, they can see a link at the top of the page that says “New Patient”. Clicking on the link will generate a pop up for data about the new patient to be entered. Once all the fields are filled in, the user will press the OK button to enter this new patient in the database.
  • To add new surveys/studies
    • The user will click on “Surveys” or “Studies” depending on what the user would like to enter. There will be a link that says “New Survey” or “New Study” that will be available at the top, and the user may click on it to fill in the prompted information in the pop up.


  • Logging in
    • Relatively the same as the logins for research coordinators and clinicians, except the user will be brought to the surveys list or the studies list.
  • These users will not be able to edit patient/survey/study information, nor make new studies or surveys or add new patients, so if they click on “New Patient” or “New Study” or “New Survey”, the pop up that appears will tell them they do not have enough privileges to add new information to the database.

  • At the bottom or the patient, survey, and study pages, there will be a link for the user to click that will provide all the information in a excel spreadsheet document.

Schedule of Meetings

September 3, 2014 - Client Meeting

The clients and team talked about the kinds of people that would need to use this program, and what each kind of user would need to do. A brief overview of some functional specifications was also gone over. The group was also informed of a short presentation to be given on the coming Monday about the project.

September 1, 2014 - Professor Meeting

Labor Day, no meeting.

August 27, 2014 - Client Meeting

The whole group met with the clients for the first time for introductions. The team was able to gain a clearer understanding of the project as well as note concerns that the client had, especially concerning security.

Journal of Decisions

August 28, 2014

The team collectively decided on their roles, with Guilherme as Chief Developer, Tony Bo as Project Manager, and Stephanie Fenton as Client Manager and Editor. It also was confirmed that the group would need to complete HIPAA training because we are dealing with medical records.



The code is privately hosted on GitHub. Please request us access.


Some documents are available on Google Drive. Please request us access.