Form 1 Survey

ClinVar Public Site Survey 2023 (NDB428)
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OMB Control Number: 0925-0648
Expiration Date: 06/30/2024
Public reporting burden for this collection of information is estimated to average 5 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

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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) __________________________________________________

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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

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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.
______ Finding my variant of interest
______ Understand the impact of a variant on disease
______ Determining the validity / credibility of a submission
______ Evaluating discrepancies between ClinVar and other databases
______ Providing feedback about data errors to ClinVar or ClinVar submitters
______ Using ClinVar information in lab / patient reports
______ Getting answers to my questions

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.
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Do you want the ability to provide corrections for data in ClinVar?

o Yes, I would like to provide corrections for all types of data
o Yes, I would like to provide corrections only for some types of data, e.g., citations
o No, never
o Not sure
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

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If ClinVar annotated submitted records (SCVs) as “requires review” based on a communityraised 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)
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Please explain your response to the previous question.
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Please rank these potential improvements that you would like to see in ClinVar.
______ Better search
______ Better display of variant pages
______ Better download options for variant pages
______ Access to older versions of submitted classifications
______ Better representation of CNVs
______ Labeling of conflicting classifications with the type of classification, e.g., P/LP vs VUS
______ Ability to investigate other variants at the same location
______ More gene-centric views
______ More graphical displays

Do you have any other suggestions for improving ClinVar?
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