What is REDCap and How does it work?
REDCap stands for Research Electronic Data Capture. It is a secure online Database system, designed to
collect (“capture”), store, secure, organize, and analyze data provided by patients who complete online
questionnaires and data collection forms. The data submitted by patients participating in our
International Collaborative (ICS) Study of Susac Syndrome are being securely stored, organized, and
analyzed by our Susac-specific REDCap Project.
How does the Susac REDCap Project work?
Each patient who signs a Consent Form to participate in our ICS is assigned a Patient ID # and will have
their own personal secure “File” within our Susac REDCap Database. The first “Folder” in their File is a
“Secure Confidential Patient Enrollment Folder,” which contains the patient’s name, their assigned
Patient ID #, their email address, their MRI reports, and other confidential information. The Principal
Investigator of the ICS (Dr. Rennebohm) is the only human who has access to this “Secure Confidential
Patient Enrollment Folder.” So he is the only person who knows what Patient ID# belongs to which
patient. All of the other Folders in the patient’s File are identified only by the anonymous Patient ID #.
Let’s imagine that you are the 30th person to enroll in the ICS. You will be assigned Patient ID # 30, and
your REDCap File will be File # 30. I will be the only human being that will know that File #30 belongs to
you. All forms/questionnaires that you fill out and submit will automatically be deposited into
appropriate Folders within File # 30 (your personal Susac REDCap File).
When I wish to send you a Susac REDCap form (for example, an IDR Form) I direct the REDCap computer
to send an IDR Form to the patient associated with File #30. The REDCap computer knows the email
address associated with File # 30 and will send the IDR Form to that email address. You will
instantaneously receive an email from REDCap. That email will contain a link to your personal Susac
REDCap File. When you click on that link, a blank IDR Form will appear. You then fill out the form and
click “Submit.” Your submitted form is then instantaneously deposited into the IDR Folder of your
personal Susac REDCap File (File #30). In addition to your IDR Folder, your File will also contain a Folder
for all of your submitted Susac Symptoms forms, and another Folder for your Susac HAQ forms, and so
on.
You will note that none of the blank forms that REDCap sends to you has an ID # on it, nor do the forms
request any other patient identifying information. The Forms do not need to have an ID # on them--because REDCap knows that the submitted form belongs to and needs to be deposited in the File
associated with the email address to which the form was sent---File #30 in your case. Only the
computer (in addition to me) knows that File #30 belongs to the patient with your email address.
At any time, I (and other members of our Research Team) can click on File #30 to see what forms you
have submitted, and we can fully view the data entered on each form. Although all members of our
Research Team will be able to open the Folders that contain your forms (none of which contain any
patient identifying information), I am the only member of our Research Team who can access your
“Secure Confidential Patient Enrollment Folder” and will know that you are Patient ID# 30.
Please be aware that some of the forms offer you the opportunity to upload certain documents (e.g.
your Patient Story, Medication Flow Sheet, etc.). When you upload such documents, be sure to delete
or otherwise obscure any patient identifying information. You may, however, place your Patient ID# on
such documents.
One drawback of the REDCap system is that I can email only one Form at a time. If I want to send
several Forms to a given patient, I need to send several individual REDCap emails, each containing only
one of the Forms.
Another drawback of the REDCap system is that it is not able to send you a copy of the form you have
just submitted---nor can it send you the results of past forms you have submitted. We, therefore,
strongly encourage you (for the sake of your own records) to make a copy of your completed form
before you click on the submit button. To do this, you should “right click” on the screen and choose
“print.” That then brings up another screen which gives you the option to save the file as a pdf on your
computer.
We want to be careful to not overwhelm you with lots of forms to fill out. In that regard, we want to
emphasize that patients may participate in the ICS at whatever level they wish---from minimal, to
maximal, and anywhere in-between. Some patients may want to provide an IDR Form and nothing
further---and that is okay. Others may be willing and able to participate according to our ideal plans.
Our ideal plans (for patients who are willing and able) are outlined below:
For Newly (or recently) Diagnosed Patients: Our ideal plan is to send (via REDCap emails) the following
series of forms (one at a time, gradually, not all at once) to newly (or recently) diagnosed patients:
 IDR Form
 Susac Patient’s Story
 Susac Symptoms Forms (to be filled out to document their status at the time of diagnosis, at the
week 1 mark, at week 2, and so on, up to the present time, then at subsequent times in the
future)
 Other forms may also be sent (e.g. Susac HAQ, Susac HL, Susac Mini-T), to document the clinical
features and course of their Susac syndrome.
Our goal is to have as many “new patients” as possible complete forms (most importantly, the
Susac Symptoms form) at designated times during the course of their illness (more frequently
during the first 6 months after diagnosis, then less frequently, eventually 1-2 times per year)---so
that we can document the clinical course and outcome of patients, including their responsiveness
to the treatment received. Please see the Supplement in the Clinical Study section of our website
to see how helpful a patient’s Serial Symptoms Scores can be---both to the patient (and their
physicians) and for research purposes.
For “Veteran” Patients (those who were diagnosed more than a year ago---e.g. 5 years ago): Our ideal
plan is to gradually (not all at once) send out the following forms:
 IDR Form
 Susac Patient’s Story
 Susac Symptoms Form (to document current symptoms---e.g. at the 5 year mark)
 Susac HAQ (to document their current functional capacity and employment status)
 Susac DDS (to document how much disease damage they think they have sustained)
 Susac QOL (to document their current Quality of Life---at the 5 year mark, e.g.)
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Susac VFQ (to document their current vision status)
Susac HL, Susac Mini-T, and Susac TSAS (to document their current hearing status).
Susac Current Medications (to document whether they are still on any immunosuppressive
medications; and, if so, which ones.)
Susac Cumulative Medications (to document what immunosuppressive medications they have
ever been treated with)
Susac Cumulative Manifestations List (to document what specific features and complications of
Susac syndrome they have experienced---at any time along the way).
Susac SAGE Test (to document their current cognitive ability).
They will also be sent a Susac Symptoms form and a Susac HAQ form to complete
retrospectively to indicate how they were doing at two early points in time---at the time of
diagnosis and at the time when their Susac syndrome was a peak severity. (These two times
may or may not be the same).
The above information will be placed alongside the patient’s MRI and fluorescein angiography
(FA) images
The above data will help us to document and study the clinical course (how the illness behaves over
time) and long term outcome of Susac syndrome, including whether patients who are treated in one
way do better (or worse) than patients treated in other ways. We will also be able to study whether
certain initial MRI findings (or other initial clinical features) require more aggressive initial
treatment.
If you have questions, or would like further information about REDCap, please contact Dr. Rennebohm.
Rob Rennebohm, MD
[email protected]