HOW TO ACCESS AND ENTER DATA INTO
THE EPOCA WEB DATA COLLECTION SYSTEM
List of contents
SECTION 1
PHYSICIAN PAGE
STEP 1 - LOG IN.....................................................................................................................2
STEP 2 - INSERT PERSONAL PATIENT INFORMATION.....................................................4
STEP 3 - INSERT JIA INFORMATION...................................................................................9
STEP 4 - LOG OUT and SYSTEM TESTING.......................................................................13
SECTION 2
THE ON-LINE COMPLETION OF THE JAMAR BY THE PARENT/CHILD
STEP 1 : PATIENT PERSONAL INFORMATION REGISTRATION.....................................15
STEP 2: PARENT/CHILD COMPLETE THE JAMAR ON LINE...........................................20
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EPOCA web system – Instructions
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SECTION 1
PHYSICIAN PAGE
STEP 1 - LOG IN
To access the EPOCA web system, click on the PRINTO website www.printo.it and log-in
in the “MEMBER AREA” (the link is in the yellow box on the left side of the page).
Type your username and password (if you can’t remember them, click on “forgot your
password?” and you’ll receive automatically an e-m@il from PRINTO with your personal
details) [fig. 1].
IMPORTANT:
We would suggest to test the system with fake patients before starting the data entry of your
real patient. In order to try the system please log-in with the following logging data:
USERNAME: test_epoca
PASSWORD: epoca
Figure 1 PRINTO log-in
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On the new page, select the EPOCA study link on the left side [fig. 2].
Figure 2 Member area
Once you enter the EPOCA section, you can start and insert the data for a new JIA patient
or for a new healthy control (only for PRINTO National Coordinators) or for a new probe
patient in the CENTRE INDEX page [fig. 3].
Figure 3 Centre index
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STEP 2 - INSERT PERSONAL PATIENT INFORMATION
Once you click on the option Insert a new JIA patient or Insert a new probe patient
or Insert a new healthy control, you are directed to the PATIENT PERSONAL
INFORMATION page, where all the personal information of the patient (healthy,
probe o JIA) can be entered as allowed by each center’s Ethics Committee [fig. 4].
As you can see the patient is registered with a code assigned automatically by the
system. It is composed by the COUTRY CODE (ex. IT, UK, FR), the CENTRE ID
(that was previously assigned by PRINTO to all centres of the network) and by the
INCREMENTAL NUMBER, indicating the progressive number of patients entered into
the system. The PRINTO patient ID can end with an H if the patient is HEALTHY and
P if it’s a PROBE.
Figure 4 New patient - Full version
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The patient registration can be performed also in a preliminary way by the nurse or by
another member of your medical staff by choosing the option “Short version” at the top of the
page : this allows to create a new patient by entering only a part of all information into a
shorter version of the page [fig. 5, red arrow].
Figure 5 New patient - Short version
The remaining information are necessary and must be completed later on by the physician
simply by clicking on “full version”.
In both cases (full version or short version) all data can be entered by clicking or typing in the
disappears and a
corresponding field. Once each box is correctly filled in, the
confirms that the completion is ok. Once all the fields are correctly filled in, you can save the
page by clicking on “save patient” at the bottom of the page.
In both the short or the full version it is important that the nurse or the physician select the
language spoken by the family for the completion of the JAMAR. The default language of the
questionnaires is the one from your country.The medical staff nurse can set up a different
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language in the personal information page to complete the JAMAR in a different language.
This is possible by scrolling down the drop-down menu [fig. 5] at the bottom of new patient
(short and full) page.
If any box has not been correctly completed, a message appears [fig. 6]:
Figure 6 Errors in the page
Once all errors have been detected and corrected you can save the page.
However, a further confirmation is requested [fig. 7]:
Figure 7 Confirm the data
If the completion is ok for you, click on the link “Yes, the data are correct”, otherwise click on
“No, I want to change some data” and you will be able to change the data and save again all
the modifications.
After you have completed either the short or the full version, the system allows to print a
document for the on-line completion of the JAMAR (see later). If an internet connection is
available at your site and the parent (and the child if applicable) has experience with the
Internet, the JAMAR questionnaire(s) can be directly completed on line while waiting for the
medical visit [fig. 8].
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Figure 8 JAMAR on line
• If the patient completes the JAMAR on the paper forms provided by PRINTO, click on
“No, parent and child complete the JAMAR on paper forms”. You are directed to the
patient visit index [fig. 9].
Figure 9 Patient visit index
The JAMAR questionnaire(s) completed by the parent (and by child if applicable for his/her
age) on paper forms could be entered by the medical staff later on.
IMPORTANT: THE SYSTEM DOES NOT ALLOW TO CONFIRM THE VISIT IF AT LEAST
THE JAMAR OF A PARENT (MOTHER OR FATHER) HAS NOT BEEN COMPLETED.
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• If the patient prefers to complete the JAMAR on line click on “Yes, parent and child
complete the JAMAR on line”. You are directed to the PERSONAL PASSWORD FOR
THE ON-LINE COMPLETION OF JAMAR page [fig. 10] (see detailed instructions in section 2 –
pg 14).
Figure 10 Generate a password
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STEP 3 - INSERT JIA INFORMATION
For each form, you can enter the data simply by clicking on “new”. Once all the fields are
completed, you are asked to confirm or not the data you have entered. At the end of the
completion of the forms you are directed to the index page again.
Each page can be viewed (by clicking on “view”) or modified (by clicking on “modify”) [fig. 1112-13].
Figure 11 New, modify, view
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Figure 12 Modify
Figure 13 View
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Note for page “DISEASE STATUS ASSESSMENTS (on the day of the visit)”
PATIENT DRUG THERAPY - If you need to cancel any drug information already entered,
you can use the symbol of the broom that you can find close to the name of each drug [Fig
14]: if you click on it, the fields corresponding to the drug already ticked will be cleaned.
Figure 14 Patient Drug Therapy
When you have completed all the forms and all data are correct, you can click on “confirm
the data” [fig. 15].
Figure 15 Confirm the data
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A second confirmation is requested [fig. 16a].
Figure 16a Second confirmation
IMPORTANT: once the visit is confirmed [fig. 16b], it will be no longer possible to make
changes to the data entered, but you will be able just to view them. If any changes are
needed, please contact PRINTO at [email protected].
Figure 176b Visit confirmed
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STEP 4 - LOG OUT and SYSTEM TESTING
Once the visit of this patient is confirmed, you can either go back to the patients’ list in order
to enter another patient or log-out by clicking on the log-out link on the right, at the top of the
page [fig. 17].
Figure 17 Log-out
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IMPORTANT ADDITIONAL NOTES:

The diagnosis will be labeled as provisional in the list of the entered patients if:
1. in the “Designation of ILAR category” form any of the Exclusion criteria for the
JIA category selected is marked as NA (Not Assessable)
2. if a conflict between the laboratory values or the clinical parameters and the
exclusion criteria listed in the ILAR category is registered.
JAMAR RE-TEST (For consecutive JIA patients 011-020)
(ONLY FOR PRINTO NATIONAL COORDINATORS)
In order to verify the reliability of the instrument, 10 parents and their children (from 011 to
020) enrolled at the PRINTO National Coordinators’ centres are asked to fill in again the
questionnaire at home within one week after the day of the visit, and send them back to the
centre by mail (or alternatively complete them by telephone interview).
For the moment the EPOCA WEB-SYSTEM does not allow to the centre to insert the
JAMAR re-test questionnaires: ONLY FOR THESE QUESTIONNAIRES we kindly ask
you to send the completed paper forms (by e-mail or fax) to PRINTO that will proceed
with the data entry. Thank you!
Testing the EPOCA system
In order to test the system and avoid any confusion during the data collection,
PRINTO has created a test user for all centres.
By logging in into the PRINTO member area with the username and password
reported below every EPOCA investigator can test the system.
USERNAME: test_epoca
PASSWORD: epoca
Some test patients have already been entered by PRINTO. Feel free to enter new fake
patients and insert/modify their data. When all system functionalities are clear, you
can proceed with the data entry of you real patients by logging in into your personal
page.
It is essential that the EPOCA investigators do not use their personal page to test the
system, since it must contain only data concerning true consecutive patients enrolled
into the EPOCA study.
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SECTION 2
THE ON-LINE COMPLETION OF THE JAMAR BY THE PARENT/CHILD
If an internet connection is available at your site and the parents/child have experience with
the Internet, the JAMAR questionnaire(s) can be directly completed on line while waiting for
the medical visit.
STEP 1 : PATIENT REGISTATION
The medical staff (the physician or the nurse) must create in the EPOCA system the visit
details for this child by entering the patient personal information [fig. 18]. To make easier and
faster this first step you can chose at this stage to enter only a few information on a shorter
version of the page by clicking on “short version” at the top of the page.
Figure 18 Full version
IMPORTANT:
In case the physician or any member of the medical team chooses the “short
version”, for the registration of the patient, the physician will have in any case to
complete the “Full Version” to proceed with the completion of the other forms and
confirm definitively the visit.
Once the personal information are entered, click on “save patient” to save the child personal
information [fig. 19].
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Figure 19 Save Patient
If the data are correct click on the link “Yes, the data are correct” [fig. 20].
Figure 20 Data are correct
Click now on “Yes, parent and child complete the JAMAR ON LINE” [fig. 21a].
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Figure 21a JAMAR on line
You can open the document clicking on the .pdf icon [fig. 21b].
Figure 21b Generate a pdf
Before printing the document verify the correctness of the data in relation to the specific
patient [fig. 22].
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.
Figure 22 Personal password document
If some information are incorrect close the .pdf document and go back to the visit index [fig.
23].
Figure 23 Back to visit index
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Re-open the personal information page and correct any data. If it’s ok now, save and confirm
again the data: the system allows to generate a new password, that is different to the
previous one. The system allows to generate an infinite number of passwords for the same
patient.
Once verified the data print the pdf document and optionally cut the second section of the
page indicated by the scissors. [fig. 24].
Figure 24 Password
This section should be given to the parent and to the child (if applicable).
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STEP 2: PARENT/CHILD COMPLETE THE JAMAR ON LINE
The parent (and the child if applicable for his her age) goes to the web address indicated in
blue on the document: http://www.printo.it/EPOCA/jamar/
The following page opens: [fig. 25].
Figure 25 Enter the password
In the text field the child or the parent should type exactly the password indicated in red on
the document.
If the letters composing the password have been incorrectly entered, the code is deleted and
the user should re-type it.
If the new password is right, the following page opens [fig. 26].
Figure 26 Patient JAMAR index
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The systems lists the labels for the three version of the JAMAR in the language of the
patient: MOTHER, FATHER, CHILD.
IMPORTANT: At least one of the two JAMAR for the parents must be completed
(mother and/or father). If the child is able for his/her age to understand the
questionnaire, the child’s version of JAMAR should be completed as well.
Click on the label “Parent's version (Mother)” [fig. 27] to open the questionnaire of the parent.
Figure 27 Parent’s version completion
The default language of the questionnaires is set up by the medical staff (physician or nurse)
in the personal information page. Optionally, the user can decide here to complete the
JAMAR in a different language. This is possible by scrolling down the drop-down menu [fig.
28] at the top of the page, on the right side:
Figure 28 Language selection
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The
correct.
The
indicates that the field is still to be completed or that the value entered is not
indicates that the field has been correctly completed [fig. 29].
Figure 29 Completed - not completed
Once all the red crosses have disappeared click on
save.
at the bottom of the page to
If some questions are still to be answered a message appears [fig. 30].
Figure 30 Errors in the page
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Click “ok” on the message and you are brought directly to the questions that still need to be
replied.
Once all the green symbols appear, you can save your answers to this version of JAMAR.
You are re-directed then to the patient list [fig.31].
Figure 31 Patient List - One JAMAR completed
The completed JAMAR is indicated with the green symbol. The JAMAR versions still to be
completed are indicated with a red cross.
If the CHILD can use the computer, he/she can follow the same procedure and complete the
child’s version of the JAMAR.
If you want to have a look to the answers given, click on “view”. To modify click again on the
label indicating the JAMAR version (Parent’s or Child’s) [fig. 32].
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Figure 32 View, Modify
If after the revision any data should be changed click on the red cross at the bottom of the
page [fig. 33].
Figure 33 Data change
The JAMAR can be now modified and re-saved by clicking on the floppy icon.
In any case, if during the completion of the JAMAR you want to go back to the list of all
versions of JAMAR click on the green arrow [fig. 34] at the top of the page.
Figure 34 Arrow to go back
If at least one parent JAMAR is completed, the page can be closed by simply closing the
browser page.
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When the physician will proceed with the completion of the other forms with the medical
information, the JAMAR will appear as already completed [fig. 35].
Figure 35 JAMAR completed
IF YOU HAVE ANY QUESTIONS REGARDING THE PROJECT OR THE SYSTEM
PLEASE CONTACT US at [email protected]
Complete PRINTO address:
Paediatric Rheumatology INternational Trials Organisation
IRCCS G. GASLINI, Pediatria II
EULAR Centre of Excellence in Rheumatology 2008-2013
Via Gaslini, 5, 16147 Genova (Italy)
Tel:+39-010-382854 or +39-010-393425
Fax::+39-010-393324 or +39-010-4211018 or +39-010-393619
Website: http://www.printo.it
http://www.pediatric-rheumatology.printo.it
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