Form 1 ClinVar Submission Survey instrument

ClinVar Submission Survey 2023 (NDB427)
Start of Block: Default Question Block
OMB Control Number: 0925-0648
Expiration Date: 06/30/2024
Public reporting burden for this collection of information is estimated to average 8 minutes per
response, including the time for reviewing instructions, searching existing data sources,
gathering and maintaining the data needed, and completing and reviewing the collection of
information. An agency may not conduct or sponsor, and a person is not required to respond to,
a collection of information unless it displays a current valid OMB control number. Send
comments regarding this burden estimate or any other aspect of this collection of information,
including suggestions for reducing this burden, to NIH, Project Clearance Branch, 6705
Rockledge Drive, MSC 7974, Bethesda, MD 20892-7974, ATTN: PRA (0925-0648). Do not
return the completed form to this address.
* Indicates required question

Page 1 of 9

Please select one professional category that describes you best.

o Life Sciences Researcher
o Geneticist
o Genetic Counselor
o Laboratory Staff
o Physician
o Other Healthcare Professional
o Bioinformatics Professional
o Computer Scientist / Software Developer
o Educator
o Student
o Librarian / Information Specialist
o Patient and Family
o Other (please specify) __________________________________________________

Page 2 of 9

Please select one type that describes your organization best.

o College or University
o Commercial or Industry
o Hospital / Clinical / Medical Practice
o Non-Profit Organization
o Government
o Other (please specify) __________________________________________________
How likely are you to recommend this resource to a friend or colleague?

o0
o1
o2
o3
o4
o5
o6
o7
o8
o9
o 10

Page 3 of 9

Were you able to complete your work to your satisfaction today?

o Yes
o No
o Unsure
Please order these tasks below from easiest to hardest.
______ Registering my organization
______ Learning about / starting a new submission
______ Updating data for a submission
______ Finding the status of my submission
______ Interpreting automated feedback (i.e., validation errors) when the submission was
uploaded
______ Interpreting submission reports and failure reports sent after the submission is
processed
______ Getting answers to my questions

What is your motivation for submission to ClinVar? (Select all that apply.)

▢
▢
▢
▢

Share with community
Helps in my organization’s curation efforts
Journal / publication requires it

Other (please specify)
__________________________________________________

Page 4 of 9

Would you be interested in feedback from ClinVar users about your submissions, e.g.,
information about newer or contradictory evidence relating to the classification, or incorrect
citations, etc.?

o Yes, always
o Yes, in certain cases
o No, never
o Not sure
Please explain your response in the previous question.
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________

If ClinVar created a mechanism to provide easier access to older versions of the variant page
with your previous submissions, do you foresee any issues? (Note: your latest submission will
always be in the default display.)

o Yes, always
o Yes, in certain cases
o No, never
o Not sure

Page 5 of 9

Please explain your response in the previous question.
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________

If ClinVar created a mechanism to exclude submitted records (SCVs) with incorrect
classifications from the calculation of the aggregate classification, do you foresee any issues?
(Note: submissions would not be changed or removed from the database. The exclusion would
only impact the summary data, e.g., the summary section at the top of a variant page.)

o Yes, always
o Yes, in certain cases
o No, never
o Not sure
Please explain your response in the previous question.
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________

Page 6 of 9

If ClinVar annotated submitted records (SCVs) as “requires review” based on a communityraised error, under what circumstances would this annotation be appropriate?

o Never
o Sometimes – when the community-raised error is from an expert panel
o
Sometimes – when the community-raised error is from organizations / people that are
known to ClinVar (e.g., has an NCBI account)
o Always
If ClinVar annotated your record as “requires review” based on a community-raised error, which
information would you want flagged?

▢
▢
▢
▢
▢
▢
▢

None, this feature is not important to me
Classification
Publications
Assertion criteria
Evidence
Condition for the classification

Other (please specify)
__________________________________________________

How would you like to be notified if any of your records are flagged as “requires review”?
________________________________________________________________

Page 7 of 9

What is a typical timeframe within which you could review and resubmit a flagged variant?

o Within hours
o Within a week
o Within 2 weeks
o Within a month
o More than a month
Would you like a mechanism to dispute a “requires review” annotation on one of your SCVs?
Please explain.
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________

Please provide any other information that you would like us to consider related to the “requires
review” feature.
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________

Page 8 of 9

Please rank these potential improvements to ClinVar’s Submission Portal in order of importance
to you?
______ More advanced automated validation with clear errors to help me correct my
submission
______ More manual help in preparing my submission
______ Faster submissions and release of data
______ Faster return of accession numbers
______ Ability for me to release the “hold until publication” on my records
______ Ability to add a PubMed ID to my submission
______ Ability to download a summary report of all potential errors identified by the community

Do you have any other suggestions for improving ClinVar submissions?
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
________________________________________________________________
End of Block: Default Question Block

Page 9 of 9