CIBMTR Center Support
a. If your center has reviewed the FAQ, E-learnings, data dictionary, and still has a question regarding the dataset/portal, please submit your questions to CIBMTR Center Support using the “What is your question regarding?” category of “CVDR”.
b. If your center has a question regarding Portal Account Credentials, please submit a ticket to CIBMTR Center Support and select the “What is your question regarding?” category of “Access”.
c. If a center needs to change your primary contact, please do so through Network Portal Partner.
CVDR FAQ
Overview
Q1: What is the CIBMTR Center Volumes Data Report (CVDR)?
A: CIBMTR has been collecting data for the SCTOD since December 2007. CIBMTR is obligated to publish yearly transplant center volumes data on the government website maintained by HRSA—http://bloodcell.transplant.hrsa.gov. CIBMTR is required to verify this information with U.S. Transplant Centers before making it available to the government website. We encourage Medical Directors to review the data with their data managers prior to submitting their status.
The Center Volume Data Reports provided in the CIBMTR Portal represents the total number of transplants reported in the last 5 years using FormsNet (FN). The data reflected in the charts, found within the CIBMTR Portal application, are the latest refreshed dataset from FormsNet as described on the CVDR Home page.
Q2: What does the CVDR timeline and process look like?
A: Please see the general CVDR timeline below.
Q3: How will CIBMTR inform my center the CVDR Portal is open & the CVDR dataset is ready for review?
A: An E-blast announcement will be distributed to centers informing them of the dates the CIBMTR CVDR dataset/portal will be open and available for review.
Q4: When should I review my dataset?
A: Please review your dataset as soon as the announcement is distributed since the portal is only open for a short period. Additionally, please submit a ticket to CIBMTR Center Support as soon as possible to allow time for investigation, updates, and corrections.
CVDR Portal
Q5: What are the different data tables displayed on the CIBMTR CVDR portal?
A: The data tables are designed to assist the centers as they review their transplant program activity for validation and confirmation. Please note, that in May of 2015, CIBMTR started requiring centers to complete a Pre-TED Form & Disease Classification Form (Form 2400/Form 2402) for all autologous transplant recipients, regardless if they consented to have their data used in research. Therefore, some adjustments to the information included in the tables were made.
For all transplants reported from your center (this includes AUTO with YES Consent and AUTO with NO consent for patients registered after May 2015).
The following tables are presented in the CVDR portal:
- Disease by Donor Type
- Disease by Graft Type
- Age by Graft Type
- Patient Sex
- Patient Race
- Transplants per Month
Q6: Why are tables not populated with any data?
A: If your center did not submit any data to CIBMTR through FormsNet (for the year your center is reviewing), these tables will still exist but will not contain any data. If you believe your center has submitted data, please submit a ticket through CIBMTR Center Support for clarification.
Q7: How can I download my data file?
A: Your data file can be downloaded by clicking on the “Download Data” button and selecting “CSV” or “Excel” as the format you would like to choose. Please note that downloading the file will only generate a report for that year. For example, if you are viewing your 2021 data report and you click “download,” you will be downloading only the records for 2021 transplants. The same concept applies for the other years.
Q8: Can I save my reports in Excel or Word?
A: Yes, you can save your CVDR reports in Excel or Word.
CVDR Data
Q9: Where can I review detailed descriptions about the CVDR data and order of precedence?
A: Please review the data dictionary located on the left-hand side on the CIBMTR CVDR Portal.
Q10: What CIBMTR forms are used in our CVDR dataset?
A: The CVDR data uses the following CIBMTR Data Collection Forms: F2814 (CRID tool), F2400, F2402, F2000, and F2006. These forms will need to be in complete (CMP) status for data to be generated in your CVDR reports. Please refer to the data dictionary for more information on data sources and precedence orders.
Q11: Why is a record missing on my dataset?
A: A record may be excluded from your dataset due to data discrepancies or missing data. This could also be due to a form not being in CMP status.
Here is a list of the data quality checks that could potentially exclude a record from being generated in your CVDR dataset:
- Disease status discrepancy (this discrepancy will not exclude cases from your CVDR report, although these will be queried.)
- Specific Disease missing (Form 2402)
- Form 2400/ Form 2402 Incomplete
- Donor type missing (Form 2400)
- Recipient Race discrepancy
- Recipient Ethnicity discrepancy
- Disease information missing (Form 2402)
- Recipient Gender discrepancy
- Recipient Birth Date discrepancy
- Recipient Birth Date missing
If any of your data falls within these categories (not including disease status discrepancy), the record will be excluded from your dataset. These records will be queried before the CVDR cycle begins. However, please review your data to ensure all forms and records are completed and data are not discrepant across forms/CRID tool.
Note: If your center is missing a record(s) which does not fall within the above categories (discrepant/missing or incomplete), please submit a ticket to CIBMTR Center Support for our team to further investigate.
Q12: How do I know if my data have been queried?
A: A query list is distributed to the centers on a weekly basis. In addition, centers can review data in QRY status in FormsNet.
Q13: How are patients with multiple products reported?
A: Patients with multiple products will be counted under only one product category. Cord blood will always have the highest precedence, then PBSC, and then BM.
For example:
Cord Blood + PBSC = Cord Blood
PBSC + BM = PBSC
Q. 14: How will Ethnicity data appear on the CVDR reports?
A: Ethnicity will be generated from the CRID tool. Ethnicity is classified as Not Hispanic or Latino, Hispanic or Latino, or Not Applicable (non-US resident). If Ethnicity is marked as “Unknown”, ethnicity will be reflected as “Data Unavailable.”
Q15: How will Race data appear on the CVDR reports?
A: This information will only be used for National Statistics by Disease. The Race is generated from the CRID tool. Race is classified as White, Black or African American, Asian, American Indian or Alaska Native, Native Hawaiian or Other Pacific Islander, or Multiple Race. If Race is marked as “Unknown” or “Not reported,” race will be reflected as “Data Unavailable”.
Note: If there are any selection of multiple races for a patient, the race will be displayed as “Multiple”
Q16: How is the age group calculated for this report?
A: For this report, Age is calculated from the difference between the Date of Birth (DOB) reported on the CRID tool and transplant (HCT) date.
Patients will be put into the following age groups: 0—10, 11—20, 21—30, 31—40, 41—50, 51—60, and >60.
Example: 3/4/2020 (HCT date) – 9/8/1973 (DOB) = 46 years, 5 months, 25 days 41—50 age grouping
Q17: Why is the disease specified in FormsNet not matching with the disease categorized in these reports?
A: CIBMTR has re-categorized some of the broad diseases and sub-diseases to match with disease reporting on the C.W. Bill Young Cell Transplantation Program Web Site. Please see the data dictionary on CIBMTR portal for further information.
Q18: What are the different roll-ups for disease status?
A: There are six different roll-ups for disease status which are classified as the following: ‘In remission’, ‘1st remission’, ‘2nd or subsequent remission’, ‘Not in remission’, ‘Data Unavailable’ or ‘Not applicable’.
Q19: How are cancelled or postponed HCTs reported?
A: Any cancelled HCTs that were reported, have been removed from the HCT count. If you still have any cancelled transplants in FormsNet, please complete the form 2008.
Q20: After reviewing my dataset and I have a question(s), how should I proceed?
A: If a center has a question regarding their dataset, please submit a ticket to the Service Now using the “What is your question regarding?” category of “CVDR”.
*Please submit a ticket CIBMTR Center Support with your data issues before submitting “Data Incomplete/Incorrect,” as most of the time, this status needs to be redacted after the data is corrected.
*Please submit a CIBMTR Center Support ticket if you submit “Data Pending” and you need CIBMTR to investigate record(s).
Data Submit Status
Q. 21: What are the different submit status options?
A: There are four Data Status options as listed below:
- Data Complete/Correct – Publish ALL Data
Selecting this option indicates that your center volume data from FormsNet are complete and accurate as displayed in the tables and dataset. Your center agrees to have all data published on the HRSA website. - Data Complete/Correct – Publish ALLO data and NOT AUTO data
Choosing this option indicates that your center volume data from FormsNet are complete and accurate as displayed in the tables and dataset. Your center agrees to have only Allogeneic and NOT Autologous Transplant Volume Data published on the HRSA website. The disclaimer below will be used for your center on the HRSA website: “Autologous data are reported voluntarily and are not available for this center.” - Data Pending for Correction – Updates in Progress
During the first round, this option may be selected to indicate that the dataset is still being reviewed by your center, updates are being made in FormsNet, and/or CIBMTR is investigating/correcting data issues on their end. Once updates are made in FormsNet (or on CIBMTR’s end), the data will be refreshed for review during the second round. Data Pending (Option 3) is not available for the final round of review. This status is not a valid publishing preference. Centers will need to submit a final data status for round 2. - Data Incomplete/Incorrect – DO NOT PUBLISH data for the center
Selecting option 4 means your center does not agree to publish your Transplant Center Volume Data. However, the CVDR leadership team will review all center statuses and reserves the right to publish a center’s data, even if they submit this publishing preference.- If the final decision is made to publish a centers data, it will be made available to the public and transplant community and the following statement will appear on the government website:
“Although data were provided for transplants performed during 2017-2021, the completeness of the reporting was not confirmed by the below centers before being included in this report. Allogeneic transplant data for these centers are made available for informational purposes for the SCTOD, as required by U.S. law.” - If the final decision is made to not publish a centers data, it will not be made available to the public and transplant community and the following statement will appear on the government website: “Although these centers performed transplants, their data could not be included in the U.S. Transplant Data by Center Report. Most of these centers did not provide data within the timeframe needed for this report. A few centers did provide data, but their data could not be validated in time for this report.”
- If centers do not submit a final data status (“Data Pending” is not considered a final status), the default setting is to publish all the center’s information. Centers that report allogeneic HCT will have this data published at a minimum.
NOTE: During the first round, option 4 SHOULD NOT be selected if the center is updating data (resolving data discrepancies/missing data) in FormsNet or if the center needs CIBMTR to investigate records.
- If the final decision is made to publish a centers data, it will be made available to the public and transplant community and the following statement will appear on the government website:
*Approval of these data for posting of center activity status applies only to “By Center” report on the government website maintained by HRSA—http://bloodcell.transplant.hrsa.gov. Data will otherwise be used for other programming purposes.
Q22: Do I have to submit a center status for the second round if I submitted a data status for the first round of CVDR?
A: Depends. If a center selects Option 1, 2 or 4 for the first round, they do not need to submit a center status for the second round. However, if they select Option 3 (Data pending), they will need to submit a center status (Options 1, 2, or 4) for the second and final round.
Q23: Who is authorized from my center to submit data status?
A: Only the Medical Director/Primary Data Contact or designated member from your Center can submit/update the data status. If you are not one of the aforementioned people, you will see the following message displayed: “You are not authorized to submit/change FN Data Status for your Center. Only the Medical Director or Primary Data Contact of your Center has this privilege. To find out your Center’s Status, please contact your Center’s Medical Director/Primary Data Contact. However, you can view the reports pertaining to your Center.”
If your center needs to update a contact, please update through the Network Partner Portal.
Q24: What happens once I submit the data status?
A: Once you submit the data status, an email will be sent to your Center’s Medical Director and the Submitter. A copy of the submit status will also be sent to the CVDR team. Your submission details will be stored in the application and made available for further communication with you.
Q25: Can I update my center’s status once I submit a data status?
A: Please carefully review your data with your Medical Director before you submit your center status. If your submission includes options 1-2 (“Complete”) or option 4 (“Do not publish”), then you have indicated that changes are not necessary. You will not be able to update your center’s data status. However, if your center’s first status submission is option #3 (“Pending”), then your center will need to submit a final data status during the second & final round.
Q26: Can I update my center’s status once I submit a data status?
A: If you have submitted an incorrect status due to error, please submit a ticket to CIBMTR Center Support using the “What is your question regarding?” category of “CVDR”. CIBMTR will remove the incorrect submit status and your center will be allowed to re-submit the correct status.
Q27: What if I don’t submit my status within the timeframe provided?
A: CIBMTR will reach out to centers who did not submit a final data status. In circumstances where Transplant centers do not have CIBMTR portal activity or who do not submit any Center Data Status by the end of the process will be classified as “Centers Not Participating in the U.S. Transplant Data by Center Report” on HRSA website. We plan to use the following statement on the public website:
“Data were provided for transplants performed during 2017-2021 by this center. Although the completeness of the reporting was not confirmed by the center before being included in this report, the data are made available for informational purposes.”
Q28: Are there any additional resources to accompany the FAQ?
A: Yes, there are multiple resources to assist centers with CVDR. CIBMTR has created a Data Management Guide, E-learnings, & data dictionary. Please utilize all these resources and submit a ticket to CIBMTR Center Support for any additional questions.