Outcomes Registry FAQs

The following measures have been released in Outcomes.  We will update this list as more measure are released. You can refer to this resource on the ICN Hub to see screenshots and step-by-step instructions on how to access new measures. All Outcomes guides can be found in the Shared Community Resources group

Update as of 9/13 - You may notice that centerlines and upper and lower control limits will be added to the charts. Please give our analysts a few weeks to double check data and adjust centerlines for all centers. You may expect to see some movement and change in the interim while the data is updated.

• All Centers Performance
• All Measures Per Center
• All Centers Per Measures
• TPMT Activity - Population Management 
• Number of ICN Centers with at least one hospital discharge within the past 90 days
• Number of hospitalizations per 1,000 Patients
• Pre-Visit Planning 
• Provider Breakout in Drill Through on most measures 
• Care Stratification Score (CSS) (Pre-Visit Planning)
• Remission Ulcerative Colitis PUCAl - will only show patients with a diagnosis captured in the registry
• Remission Crohn's Disease sPCDAI - will only show patients with a diagnosis captured in the registry
• Hospitalization in the last 30 Days
  
• Percent of visits where TPMT has been measured when treatment with thiopurine is started (TPMT)
• Percent of actual visits recorded in registry (VISREP)
• Diagnosis at last visit (Population Management) 
• Prednisone Usage (Population Management)
• Remission Status (Population Management)
• Sustained Remission (Population Management)
• Growth Status (Population Management)
• Nutritional Status (Population Management)
• Prednisone Usage (Population Management)
• Visit Within 200 Days (Population Management)
• Percent of Remission - Ulcerative Colitis Physician's Global Assessment
• Percent of Remission - Crohn's Disease Physician's Global Assessment
• Percent of registerable population that is registered 
• Patient Population by Patient Race
• Patient Population by Patient Ethnicity
• Patient Population by Patient Gender
• Patient Population by Age Category
• Percent of visits entered that were entered within 30 days of visit date 
• Percent of patients in the practice (registered and not deactivated) with a visit recorded in last 13 months.
• Percent of patients with Satisfactory Nutritional Status 
• Percent of patients with At Risk of Nutritional Failure
• Percent of patients In Nutritional Failure
• Percent of patients with Satisfactory Growth Status
• Percent of patients with At Risk of Growth Failure
• Percent of patients in Growth Failure
• Percent of patients with Documented Visit within the Last 200 Days
• Percent of patients with Sustained Remission
• Percent of Ulcerative Colitis patients with Sustained Remission
• Percent of Crohn's Disease patients with Sustained Remission
• Number of Activated Patients and Number of Deactivated Patients
• Percent of patients not taking prednisone
• Percent of Ulcerative Colitis patients not taking prednisone
• Percent of Crohn's Disease patients not taking prednisone
• Percent of patients with disease status of mild
• Percent of patients with disease status of moderate/severe
• Percent of patients with disease status of inactive
• Percent of patients in Clinical Remission, PGA
• Percent of Crohn’s Disease patients with prednisone-free clinical remission, PGA
• Percent of Ulcerative Colitis patients with prednisone-free clinical remission, PGA
• Percent of patients with prednisone-free clinical remission, PGA
• Percent of visits with a complete bundle
• Percent of visits with height, weight, and BMI plotted

U.S. News & World Report Guidance

• Questions have been released for the U.S. News & World Report and all centers should be able to answer by pulling their data in Outcomes. This includes: Percent of patients with prednisone-free clinical remission, PGA. Please make sure all of your patient data is up-to-date to see the most accurate results in your charts. As a reminder, we would not consider this data ‘final’ until all back data entry is complete. Refer to this User Guide on how to pull your data from Outcomes on the ICN Hub. 
• How can centers use Outcomes to answer a question about how many unique patients received treatment for Inflammatory Bowel Disease? If your center's data is up-to-date, you have registered all patients & every doctor participates in ICN and the registry, then you can use the denominator from Prednisone-Free Remission, or the denominator from Remission to answer this question.

Refer to this User Guide on the ICN Hub for detailed instructions on how to answer USNWR questions. 

Yes, there is about a 10 second lag before patient data appears under visit history. This allows the data to move through Outcomes' backend database. 

Deactivate: You would deactivate a patient when a patient transitions or transfers - either to a new provider or to a new center. The patient's data stays in the registry and can be used. 

Remove: You would remove a patient from the registry if a patient has somehow been misdiagnosed or is not a true IBD diagnosis. The patient's data will no longer be used in the registry. 

Update: Deactivated or removed patients should be reflected in reports within 24 hours. If you are noticing this change takes longer - please reach out to the helpdesk

Yes! Outcomes has enhanced functionality and we ask that you please upload consent and guardian information to Outcomes, as well as include it in any binders your center uses for consent documentation to ensure all participants have the most up-to-date research permissions.  

1) You will need to register for an ICN Hub account. 

• Register for the Hub – Using your professional email address for better security
• Use the activation code BETTERTOGETHER

2) Your Center's Key Contact has to give permission to use Outcomes. If you have not been given access, please contact your Key Contact. Email [email protected] if you do not know your center's Key Contact. 

3) Once an ICN Hub profile is created, and you are given permission by your Key Contact, you can access Outcomes: 

• Sign into the ICN Hub
• Click on Outcomes under Quick Links on the left navigation bar. 

You can send an email to [email protected] with the provider's name and the helpdesk team will add them to your provider list.

Electronic Data Transfer (EDT) has been released to all centers that have existing processes already established. Please send specific questions about EDT to the Helpdesk and they will work with you to make sure you have what you need!

You must click on the "Submit" button to ensure the data you have entered has been saved. This is on the last page of data entry. We recommend not navigating away from entering data as any data entered will be lost until the "Submit" button has been clicked. 

Updated 7/30/2021

The Visit form has recently been updated to enable carry forward functionality for questions related to extent of disease and TPMT testing.  Moving forward, these fields will pre-populate with the most recent non-missing value that has been entered in Outcomes. You will still need to confirm that the values are correct and will have the ability to update them if they need to be changed. 

Outcomes uses a universal numbering system, which means patients at the same center will no longer have sequential IDs. This new number system makes it easier for centers with more rigid data use guidelines to follow.  

If there is no activation form, the default setting is to consider the patient active, so a date won't appear unless the form has been changed.

This form should only be updated if a patient transitions away from your practice, has a colectomy, or should not be in the registry anymore. There is an “active” button in the form, but that should only be used if a patient transitions away and then comes back to your practice.

If you search for the patient and look in the table, the patient will be listed as active in the disposition status.

If recently started: (<6 months)​
- Include any details you do know for induction ​
- Most important to provide induction Month and Year, if known​
- This will enable new start therapeutic drug monitoring​

​
If patient has been on biologic for some time: ​
- Provide induction Month and Year, if known​
- This will enable Yr1 and/or annual drug monitoring ​
- Capture current maintenance dosing​

There will not be new CRFs -- the order of the biologic questions (within visit) have changed slightly but it should be more efficient. The content has not changed at all.

This is not on the plan for July but is a conversation Hive has been having with the network and other vendors to see how it will go. It's something we're interested in making happen but it will not be ready for the July go-live.

We do not yet have an expected date when eConsent will be live as we are prioritizing it behind center reporting and measure needs. We will update you as soon as we do. In the interim, please consent participants using the traditional paper and pen method, using the consent form approved by your local IRB or IRB of record. If you have any questions about your approved consent form, you can email [email protected]

 Use of medication and lab entries between visits is added flexibility we'll have with the new registry structure but is NOT a requirement for centers to use

Key contacts have an important role to manage their team and ensure the right people have access to Outcomes. These are action steps for Key Contacts.

Now that your Center has access to Outcomes, Key Contacts need to: 

1) Register for the Hub - As your center's Key Contact, you MUST have a Hub account to manage your center's contacts & user permissions for your team to access Outcomes. 

• Register for the Hub – Using your professional email address for better security
• Use the activation code BETTERTOGETHER

2) Review your staff list and make any necessary updates (see pages 7-15 of the Key Contact User Guide).

• Key Contact, Physician Lead & Regulatory Contact roles have been migrated from the old Contact Management System to our new system for staff that have created Hub accounts. If you do not see a member of your center listed, please ask them to sign up for the Hub. 

3) Grant Outcomes registry access to those at your center who need it (see page 16 of the Key Contact User Guide).

• As the Key Contact, you are also an Outcomes Admin and can grant access to any center staff who needs access, including giving yourself access to PHI. 
• Reminder: Any staff that are granted access to Outcomes registry must be listed on your center’s ICN IRB

You can view the Outcome registry trainings at the links below. 

• Outcomes registry training: https://youtu.be/nigktLAzhMI
  • Download Outcomes registry training slides
  • Updated Training on reports, exporting and drill-downs: https://www.youtube.com/watch?v=c_TyES_KvHM
• COMBINE registry training: https://youtu.be/rgMJ2iTF0Fk

Yes, a form can be edited after submission. Simply open the form, click on the "Pencil" icon in the top right corner, update any information necessary, and continue through data entry as you normally would.

If a visit or other submission needs to be deleted, send an email to [email protected] 

Please enter patient visit data into Outcomes within 30 days of the visit to have the best data quality.

• Patient numbers will be visible on the patient screen once the Outcomes platform has been updated.
• When creating a new patient, dummy data can be entered for patient name and MRN fields. Once created, you’ll see the patient number on the patient screen. The registration information can then be updated to use the Patient Number.
• Note: if bulk loading patient visit information via file (EDT) you must use the same patient identifier/MRN as the system for the visits to be loaded properly.

You can find past Registry eNews and other communications on the ICN Hub in the ICN Communications group.