This anonymous survey seeks input from professionals across the biopharma and life sciences sectors on their use of resources—such as software tools, research platforms, and datasets—many supported by the U.S. NIH and other federal agencies. As funding priorities evolve, continued support for these essential resources may be at risk, potentially impacting innovation, collaboration, and patient outcomes. While the survey focuses on U.S.-hosted resources, global participation is strongly encouraged to help illustrate their broad, international value. Your responses will be anonymized and shared with scientific leaders and policy stakeholders to inform future funding decisions, advocacy efforts, and risk mitigation strategies.

Responses to all questions are optional and non-exhaustive. You are encouraged to respond only where applicable or relevant to your expertise.

This survey was developed by members of the Global Alliance for Open Science (GAFOS), formed at the 2025 Bio-IT World Conference & Expo. For any questions, feel free to reach out to any of the contributors below:
  • Mary Chitty mgchitty@gmail.com
  • Cindy Crowninshield ccrowninshield@healthtech.com
  • Brandi Davis-Dusenbery, PhD brandi.davis-dusenbery@zs.com
  • Cera Fisher, PhD cera.fisher@velsera.com
  • John Greene, PhD jgreene@essexmanagement.com
  • Eleanor Howe, PhD eleanor@diamondage.com
  • Nick Juty, PhD nsjuty@gmail.com
  • Nick Lynch, PhD nick.lynch@curlewresearch.com
  • Douaa Mugahid, PhD dmugahid@hsph.harvard.edu
  • Tudor Oprea, MD, PhD toprea@expertsystems.inc
  • Christopher Southan, PhD cdsouthan@gmail.com

Thank you for sharing your voice in this important initiative. Please submit your response by June 15, 2025.

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* 1. What best describes your sector?

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* 2. What is your primary role?

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* 3. What is your geographic location?

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* 4. Are you directly involved in data analysis for drug discovery or diagnostics?

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* 5. Is your work directly affected by the current changes in US-based biomedical research funding?

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* 6. Resources from Major NIH Research Programs: Please rate how the data, technology, and/or knowledge developed by each of the following NIH programs has or will impact patient care and outcomes (including prevention, diagnostics, and therapies) through 2030.

(Note: The programs listed below represent a cross-section of landmark NIH-supported initiatives spanning multiple decades. They are presented in approximate chronological order based on their launch year and are not intended to reflect a comprehensive list. Your input will help highlight the real-world impact of publicly funded research on patient outcomes. Please select as many as are relevant to your work.)

  Dramatic Impact Moderate Impact Unlikely Impact Not Familiar with Program
Framingham Heart Study (1948)
Multicenter AIDS Cohort Study (MACS) (1984)
Women’s Interagency HIV Study (WIHS) (1993)
Human Genome Project (1990)
Encyclopedia of DNA Elements (ENCODE) (2003)
The Cancer Genome Atlas (TCGA) (2006)
Genotype-Tissue Expression Project (GTEx) (2010)
Alzheimer’s Disease Sequencing Project (ADSP) (2012)
BRAIN Initiative (2013)
Gabriella Miller Kids First Pediatric Research Program (2014)
Cancer Moonshot (2016)
All of Us Research Program (2018)
Human BioMolecular Atlas Program (HuBMAP) (2018)
Helping to End Addiction Long-term Initiative (HEAL) (2018)
Researching COVID to Enhance Recovery (RECOVER) (2021)
Bridge2AI (2022)

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* 7. Resources from Major NIH Research Programs: Please rate how the data, technology and/or knowledge developed by each of the following NIH programs has, or will impact our fundamental understanding of biological processes (consider through 2030). Please select as many as are relevant to your work.

  Transformational Impact Moderate Impact Low Impact Not Familiar with Program
Framingham Heart Study (1948)
Multicenter AIDS Cohort Study (MACS) (1984)
Women’s Interagency HIV Study (WIHS) (1993)
Human Genome Project (1990)
Encyclopedia of DNA Elements (ENCODE) (2003)
The Cancer Genome Atlas (TCGA) (2006)
Genotype-Tissue Expression Project (GTEx) (2010)
Alzheimer’s Disease Sequencing Project (ADSP) (2012)
BRAIN Initiative (2013)
Gabriella Miller Kids First Pediatric Research Program (2014)
Cancer Moonshot (2016)
All of Us Research Program (2018)
Human BioMolecular Atlas Program (HuBMAP) (2018)
Helping to End Addiction Long-term Initiative (HEAL) (2018)
Researching COVID to Enhance Recovery (RECOVER) (2021)
Bridge2AI (2022)

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* 8. Resources from Major NIH Research Programs: Please indicate the importance of continued access to data / tools from each of the below programs for your work. Please select as many as are relevant to your work.

  High Importance Moderate Importance Low Importance Not Familiar with Program
Framingham Heart Study (1948)
Multicenter AIDS Cohort Study (MACS) (1984)
Women’s Interagency HIV Study (WIHS) (1993)
Human Genome Project (1990)
Encyclopedia of DNA Elements (ENCODE) (2003)
The Cancer Genome Atlas (TCGA) (2006)
Genotype-Tissue Expression Project (GTEx) (2010)
Alzheimer’s Disease Sequencing Project (ADSP) (2012)
BRAIN Initiative (2013)
Gabriella Miller Kids First Pediatric Research Program (2014)
Cancer Moonshot (2016)
All of Us Research Program (2018)
Human BioMolecular Atlas Program (HuBMAP) (2018)
Helping to End Addiction Long-term Initiative (HEAL) (2018)
Researching COVID to Enhance Recovery (RECOVER) (2021)
Bridge2AI (2022)

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* 9. Data Repositories and Reference Sources: Please indicate the relevance of each resource to your work.

  My work would be impossible without this resource. My work would be slower, or vastly more expensive without this resource. My work would be moderately slowed or moderately more expensive without this resource. My work would be unaffected by the loss of this resource. Unknown / N/A
Clinical trials.gov
dbGaP
GEO
NCI Thesaurus
Protein Data Bank (PDB)
PubChem
PubMed
SRA
Other NCBI Resources (To view a full list of resources see this list https://www.ncbi.nlm.nih.gov/guide/all/)

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* 10. Open Source Tools: Please indicate the relevance of each resource to your work.

  My work would be impossible without this resource. My work would be slower, or vastly more expensive without this resource. My work would be moderately slowed or moderately more expensive without this resource. My work would be unaffected by the loss of this resource. Unknown / N/A
Bioconductor packages
Biopython packages
BLAST
GATK
Galaxy
ImageJ
Samtools
SBgrid
RELION
Seurat
UCSC Genome Browser

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* 11. Public Sentiment & Risk: How would you describe the overall importance of US publicly funded data/software platforms to your organization’s work?

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* 12. Public Sentiment & Risk: Have recent US-funding changes or access limitations affected your work?

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* 13. Public Sentiment & Risk: Do you foresee risks to your work or your organization's operations if US-funded data resources become unstable or discontinued?

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* 14. Public Sentiment & Risk: For Non US participants, please describe how reduced access to US-based public data resources would impact your work.

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* 15. Desired Outcomes & Call to Action: What outcomes or call to action(s) would you like to see from this survey initiative? (Select all that apply)

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* 16. Desired Outcomes & Call to Action: Do you have suggestions for how the research community can mitigate risks from potential loss of public resources?

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* 17. Additional Comments: If you have any additional thoughts or examples you'd like to share, please feel free to include them here. While this survey is anonymous, you’re welcome to provide your name and email address if you’d like to discuss further or be involved in ongoing efforts to protect public data resources. Your contact information will only be used for follow-up and will not be shared or published in the survey results.

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