Kids First Program Survey

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* 1. First & Last Name (this will be kept confidential):

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* 2. Job Title or Academic Position:

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* 3. How did you hear about Kids First?

I am part of a Kids First X01 cohort project team

I am collaborating with a Kids First X01 cohort project team

Through the ASHG schedule

Through the Kids First Data Resource Center

Through a Kids First sequencing center

Through the NIH

Other (please specify)

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* 4. In what ways has working with the Kids First program impacted your research? Check all that apply. “Kids First has helped me…”

Identify causal variants in my cohort by supporting whole genome sequencing

Use new tools or pipelines to analyze genomic data

More quickly analyze data using cloud-based infrastructure

Identify new collaborators

Generate preliminary data for other research opportunities

Engage with foundations and other organizations that support my research area

I have not yet worked with the Kids First program

Other (please specify)

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* 5. Are you preparing any manuscripts for publication that report on findings from Kids First data?

No, but I intend

No and I do not intend to

Yes. If so, when do you anticipate the manuscript to be published?

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* 6. Are you involved in a cross-cohort or cross-disease collaboration with another Kids First investigator?

No, but I intend to start one

No and I do not intend to start one

Yes. If so, which conditions are you studying?

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* 7. What clinical/phenotypic information do you think is necessary to facilitate cross-cohort comparisons?

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* 8. Describe one resource or tool you have used to support analysis/discovery of your research that other Kids First researchers should be aware of (e.g., PhenoDB, Exomiser):

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* 9. Should the resource or tool described in #8 be integrated into the Kids First DRC?

Yes

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* 10. Describe one non-Kids First dataset that you think should be integrated into or interoperable with the Kids First Data Resource Portal:

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* 11. What type of products or outcomes do you intend to create using the Kids First data?

Publications

Clinical research protocols

Basic research protocols

Tools and methods for analyzing genomic data

(Not Applicable)

Other (please specify)

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* 12. Using numbers 1-11 (1= most important, 11=least important), please indicate how you would prioritize potential Kids First activities to support your research:

Funds to support the collection, extraction, organization, curation and harmonization of clinical and phenotypic data associated with Kids First projects

Funds to support to consenting or re-consenting existing cohorts for broad data sharing

Funds to support additional whole genome sequencing

Access to resources for deeper genomic or complimentary -omic data generation (e.g. transcriptomic, proteomics, epigenomics, phosphoproteomics) to add to the Kids First dataset

Funds to support personnel for project-level bioinformatics/analysis efforts

Cloud-credits to compute data in cloud-based infrastructure

Funds to stimulate development of tools and methods relevant to Kids First

Funds to support functional validation and the development of animal models

The creation or coordination of a pediatric control whole genome dataset

Funds to support clinical sequencing and return of results to patients and families

Incorporating non-Kids First datasets into the Kids First Data Resource environment

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* 13. Do you think the program should consider expanding its scope to include research of pediatric conditions beyond childhood cancer and structural birth defects?

Yes

Not sure

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* 14. While working with Kids First data, please rate the level of ease/difficulty you have experienced with the following

	Very Easy	Somewhat Easy	Neither easy nor difficult	Somewhat Difficult	Very Difficult	N/A
Accessing Kids First data in dbGaP	Accessing Kids First data in dbGaP Very Easy	Accessing Kids First data in dbGaP Somewhat Easy	Accessing Kids First data in dbGaP Neither easy nor difficult	Accessing Kids First data in dbGaP Somewhat Difficult	Accessing Kids First data in dbGaP Very Difficult	Accessing Kids First data in dbGaP N/A
Using the Kids First Data Resource Portal	Using the Kids First Data Resource Portal Very Easy	Using the Kids First Data Resource Portal Somewhat Easy	Using the Kids First Data Resource Portal Neither easy nor difficult	Using the Kids First Data Resource Portal Somewhat Difficult	Using the Kids First Data Resource Portal Very Difficult	Using the Kids First Data Resource Portal N/A
Analyzing whole genome data that used different reference genomes or variant callers	Analyzing whole genome data that used different reference genomes or variant callers Very Easy	Analyzing whole genome data that used different reference genomes or variant callers Somewhat Easy	Analyzing whole genome data that used different reference genomes or variant callers Neither easy nor difficult	Analyzing whole genome data that used different reference genomes or variant callers Somewhat Difficult	Analyzing whole genome data that used different reference genomes or variant callers Very Difficult	Analyzing whole genome data that used different reference genomes or variant callers N/A
Analyzing large whole genome files with limited data storage resources	Analyzing large whole genome files with limited data storage resources Very Easy	Analyzing large whole genome files with limited data storage resources Somewhat Easy	Analyzing large whole genome files with limited data storage resources Neither easy nor difficult	Analyzing large whole genome files with limited data storage resources Somewhat Difficult	Analyzing large whole genome files with limited data storage resources Very Difficult	Analyzing large whole genome files with limited data storage resources N/A
Analyzing Kids First data with limited or unharmonized clinical/phenotypic data	Analyzing Kids First data with limited or unharmonized clinical/phenotypic data Very Easy	Analyzing Kids First data with limited or unharmonized clinical/phenotypic data Somewhat Easy	Analyzing Kids First data with limited or unharmonized clinical/phenotypic data Neither easy nor difficult	Analyzing Kids First data with limited or unharmonized clinical/phenotypic data Somewhat Difficult	Analyzing Kids First data with limited or unharmonized clinical/phenotypic data Very Difficult	Analyzing Kids First data with limited or unharmonized clinical/phenotypic data N/A

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* 15. The NIH Kids First Working Group is undertaking a strategic planning process to determine how to best support Kids First efforts in the remaining years of the program. Please describe what we should consider (especially if it was not already addressed above):

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* 1. First & Last Name (this will be kept confidential):

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* 2. Job Title or Academic Position:

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* 3. How did you hear about Kids First?

Question Title

* 4. In what ways has working with the Kids First program impacted your research? Check all that apply. “Kids First has helped me…”

Question Title

* 5. Are you preparing any manuscripts for publication that report on findings from Kids First data?

Question Title

* 6. Are you involved in a cross-cohort or cross-disease collaboration with another Kids First investigator?

Question Title

* 7. What clinical/phenotypic information do you think is necessary to facilitate cross-cohort comparisons?

Question Title

* 8. Describe one resource or tool you have used to support analysis/discovery of your research that other Kids First researchers should be aware of (e.g., PhenoDB, Exomiser):

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* 9. Should the resource or tool described in #8 be integrated into the Kids First DRC?

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* 10. Describe one non-Kids First dataset that you think should be integrated into or interoperable with the Kids First Data Resource Portal:

Question Title

* 11. What type of products or outcomes do you intend to create using the Kids First data?

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* 12. Using numbers 1-11 (1= most important, 11=least important), please indicate how you would prioritize potential Kids First activities to support your research:

Question Title

* 13. Do you think the program should consider expanding its scope to include research of pediatric conditions beyond childhood cancer and structural birth defects?

Question Title

* 14. While working with Kids First data, please rate the level of ease/difficulty you have experienced with the following

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* 15. The NIH Kids First Working Group is undertaking a strategic planning process to determine how to best support Kids First efforts in the remaining years of the program. Please describe what we should consider (especially if it was not already addressed above):

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* 16. Any other comments or feedback?