Form 1 NeuroNext Survey questions

NINDS Feedback Survey of NeuroNEXT
OMB# 0925-0648
Exp: 06/31/2024
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Thank you for providing your feedback on your experiences with NeuroNEXT. NINDS is conducting
this survey of NeuroNEXT participants to assess satisfaction with service delivery by the network and
NINDS; to determine the extent to which participants feel the network has facilitated the development
and conduct of high-quality exploratory trials and biomarker validation studies for neurological
disorders other than stroke; and to obtain feedback relevant to program improvement.
Your participation in this survey is voluntary. Please note that your responses will not be identified
with you personally or with your organization; survey results will be reported only in aggregate or de‐
identified form. NINDS does not plan to publish results of this survey but will use the responses
received to inform future program improvements. If you have questions about the survey, or if you
have any technical difficulty accessing or responding to the survey, please contact Dr. Cristina Nigro
([email protected]).
* 1. Within which component of the network are you based? Select all that apply to your current or past
participation in the network.
Clinical Coordinating Center (CCC)
Data Coordinating Center (DCC)
Clinical Study Site
Non-NeuroNEXT site

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* 2. What is your role within the network? Select all that apply.
CCC/DCC Leadership
NeuroNEXT (NN) Site PI/Co-PI/Co-I
Protocol Principal Investigator (PPI)/Co-I
Clinical Study Site (CSS) PI, Co-PI/Co-I
CCC or DCC Project/Site Management/Coordination
CCC or DCC infrastructure support
NeuroNEXT (NN) Site Coordinator/Manager
Protocol Principal Investigator (PPI) Coordinator
Clinical Study Site (CSS) Coordinator/Manager
Clinical Study Site (CSS) clinical or support staff
NeuroNEXT Fellow
Network Committee member
Other (please specify)

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NINDS Feedback Survey of NeuroNEXT
Overall network goals
3. What additions, removals, or changes to how the network is organized or managed would increase your
satisfaction with the network’s services and operations? Please list the top 3.
1.
2.
3.

4. Some of the goals from the original Funding Opportunity Announcements (FOAs) for the network are listed
in the table below. Please indicate your satisfaction with how the network as a whole has addressed each of
these goals:
Very
dissatisfied Dissatisfied

Neutral

Satisfied

Very
satisfied

No opinion

Support for high-quality, multi-site Phase 2 clinical
trials
Support for high-quality, multi-site clinical studies to
validate biomarkers and outcomes
Efficient execution of clinical trials and studies
Develop a stable infrastructure and research
capacity that is equipped to adequately serve all
areas of neurology except stroke
Research training and career development for
clinical investigators
Development of public-private partnerships that
engage industry and/or non-profit organizations in
network research

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NINDS Feedback Survey of NeuroNEXT
Network portfolio
5. Please indicate your satisfaction with the extent to which the network conducts important studies that are
improving treatment or will lead to treatments for neurological disorders in the next 10 years.
Very dissatisfied

Dissatisfied

Neutral

Satisfied

Very satisfied

No opinion

6. Currently, the number of trials approved and being conducted in NeuroNEXT are:
Too few

Just right

Too many

No opinion

7. Please indicate your satisfaction with each of the following items related to the network’s support for a
balanced portfolio of high-quality, multi-site trials and clinical studies:
Very
dissatisfied Dissatisfied

Neutral

Satisfied

Very
satisfied

No opinion

Number of studies focused on adult populations
Number of studies focused on pediatric populations
Range of disease/condition study areas
Range of intervention types
Promotion and development of a pipeline for
potential future trials for the network

8. What (if anything) would you want to see done differently related to best supporting a balanced portfolio of
studies?

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9. NINDS seeks to support clinical networks that are open to all researchers with great ideas for new clinical
studies. Please indicate your satisfaction with each of the following items related to the extent to which the
network encourages investigators within the network and outside the network to submit proposals:
Very
dissatisfied Dissatisfied

Neutral

Satisfied

Very satisfied No opinion

The network encourages investigators within the
network to submit proposals
The network encourages investigators from the
research community outside the network to submit
proposals

10. Please indicate your satisfaction with each of the following items related to the extent to which the network
encourages innovative study designs and approaches:
Very
dissatisfied Dissatisfied

Neutral

Satisfied

Very
satisfied

No opinion

The network supports the application of a variety of
innovative study designs and approaches
The network engages investigators with relevant
expertise from within the network in trial design and
implementation
The network engages investigators with relevant
expertise from outside the network in trial design
and implementation

11. What (if anything) could the network do to encourage and enable innovation?

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NINDS Feedback Survey of NeuroNEXT
Study execution and efficiency
12. Please indicate your satisfaction with the network on each of the following items related to efficient
execution of clinical trials and studies:
Very
dissatisfied Dissatisfied

Neutral

Satisfied

Very
satisfied

No opinion

Time from initial study proposal to funding (preaward)
Time to study start-up after notice of funding (postaward)
Participant enrollment
Participant retention
Study procedures execution
Data quality
Study monitoring

13. What (if anything) would you change to improve the efficiency of the network in executing clinical trials and
studies?

14. Please indicate your satisfaction with the network in facilitating sharing best practices in enrolling and
retaining diverse participants across the following demographic characteristics:
Very
dissatisfied Dissatisfied

Neutral

Satisfied

Very
satisfied

No opinion

Sex/gender
Sexual and gender minorities
Race/ethnicity
Geographic distribution, including rural areas
Socioeconomic status

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15. In what ways could the network improve in facilitating enrollment and retention of diverse participants?

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NINDS Feedback Survey of NeuroNEXT
Proposal submission
* 16. If you are an investigator who has submitted a proposal for a NeuroNEXT trial, have you ever withdrawn
a proposal or grant application or chosen not to resubmit an unfunded application?
Yes
No
N/A

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NINDS Feedback Survey of NeuroNEXT
17. Why did you withdraw or choose not to resubmit your application for a NeuroNEXT trial? Select all that
apply.
I needed more preparation
The network wasn’t the right fit
The network didn’t provide adequate support for preparing my application for resubmission
I chose to pursue other research directions
The timeline for resubmitting did not fit my needs
I found support elsewhere
Other (please specify)

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NINDS Feedback Survey of NeuroNEXT
Support from the network coordinating centers
18. Please indicate your satisfaction with network on the following functions and activities it supports during
the conceptual phase (i.e., all activities leading up to grant submission) of potential trials funded by NINDS:
Very
dissatisfied Dissatisfied

Neutral

Satisfied

Very
satisfied

No opinion

Contribute to the development of new projects for
submission
Assessment of recruitment feasibility of a new study
Contribute to the development of the study timeline
Contribute to the development of the study budget
Contribute to the successful submission and
approval of IND/IDE’s
Statistical design support provided by the DCC

19. Please indicate your satisfaction with the network on the following functions and activities it supports
during the planning phase (i.e., all activities from notice of funding approval to study start date) of trials
funded by NINDS:
Very
dissatisfied Dissatisfied

Neutral

Satisfied

Very
satisfied

No opinion

Rapid review and approval of new studies or
amendments by the cIRB
Contribute to the selection of sites for new trials
Contribute to the development of plans to enhance
the diversity of participant enrollment in network
trials
Contribute to the development of the data
management and monitoring plan

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20. Please indicate your satisfaction with the network on the following functions and activities it supports
during the implementation phase (i.e., all activities from study start to study completion) of trials funded by
NINDS:
Very
dissatisfied Dissatisfied

Neutral

Satisfied

Very satisfied No opinion

Contribute to the rapid initiation of new trials
Assistance with participant enrollment and
retention in network trials
Effective and efficient use of the central pharmacy
Effective and efficient use of the central laboratory
Assurance of safety monitoring and monitoring site
performance
Efficient and effective use of the DCC centralized
data management system
Assurance of data quality
Statistical oversight provided by the DCC
Support with analysis, publication, and
dissemination of results

21. What (if anything) would you want to see done differently related to how the network provides support
during the conceptual, planning, and/or implementation phases of trials funded by NINDS?

22. How satisfied are you with the quality of NeuroNEXT communication and collaboration activities among
network components and investigators?
Very dissatisfied

Dissatisfied

Neutral

Satisfied

Very satisfied

No opinion

23. What (if anything) would you want to see done differently related to how the network supports
communication and collaboration among network components and investigators?

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NINDS Feedback Survey of NeuroNEXT
Training activities
* 24. Have you participated in any training and/or professional development activities as part of NeuroNEXT?
Yes
No

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NINDS Feedback Survey of NeuroNEXT
Training activities
25. Please indicate your satisfaction with the network in each of the following items related to research training
and career development for clinical investigators:
Very
dissatisfied Dissatisfied

Neutral

Satisfied

Very satisfied

N/A

Site-specific NeuroNEXT Fellows program
Clinical Trials Methodology Course (CTMC)
Training and mentorship for coordinators
Network-wide NeuroNEXT Fellows activities
(webinar series, interviews with experts,
networking opportunities)

26. What (if anything) would you want to see done differently in terms of training activities provided for:
New clinical investigators, including NeuroNEXT
fellows

Trial PIs

Site PIs

Network coordinators and other staff

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NINDS Feedback Survey of NeuroNEXT
Community engagement
27. Please indicate your satisfaction with the network in each of the following items related to community
engagement:
Very
dissatisfied Dissatisfied

Neutral

Satisfied

Very satisfied No opinion

Engages patient communities in identifying study
areas ripe for answering important questions
Engages research communities across disciplines
in identifying study areas ripe for answering
important questions
Engages patient communities in developing study
designs
Engages research communities across disciplines
in developing study designs
Engages patient communities for support in
participant enrollment and retention
Engages patient communities in reviewing and
interpreting results
Engages patient communities with diverse gender,
race/ethnic, geographic, and other medically
underserved backgrounds
Enables partnerships between other NIH networks,
non-profit organizations, industry, and/or
international researchers or organizations

28. What suggestions do you have for additional outreach or engagement with research and patient
communities that would help the network achieve its goals?

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NINDS Feedback Survey of NeuroNEXT
Support from NINDS
29. Please indicate your satisfaction with the following types of support you’ve received from NINDS program
staff:
Very
dissatisfied Dissatisfied

Neutral

Satisfied

Very
satisfied

N/A

Pre-submission or pre-award support (e.g., concept
development, proposal development, IRB and
council review, etc.)
Post-award/study execution support (e.g., milestone
development, monitoring, progress reporting, etc.)

30. What (if anything) would you want to see done differently related to support you’ve received from NINDS
program staff? Are there other support services that NINDS program staff could have provided that would
have facilitated your network-related activities?

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NINDS Feedback Survey of NeuroNEXT
Lessons learned
31. We would like to know about any positive aspects of your involvement in the network that you consider
important to the functioning, impact, or success of the network that we may not capture from other areas of
this survey. Please include any details, anecdotes, or stories about anything you might wish to share about
things like the benefits of participating in the network, the impact it has had on your research or career, etc.
Please note that all answers on this survey are secure to the extent permitted by law.

32. It is also important for us to know about any negative aspects (concerns, problems, issues) of your
involvement in the network that you consider important to the functioning, impact, or success of the network.
Please note that all answers on this survey are secure to the extent permitted by law.

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NINDS Feedback Survey of NeuroNEXT
Follow-up (optional)
33. Would you be willing to participate in a follow-up interview or group discussion? Please note that your
survey responses will remain secure to the extent permitted by law, regardless of your answer to this question.
Yes
No

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NINDS Feedback Survey of NeuroNEXT
34. Please provide your email address so that we may contact you about scheduling a follow-up interview or
group discussion.
Email Address

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