Appendix E National Cancer Institute and National Dialogue on Cancer Research Team Questionnaire to Assess Biospecimen Needs and Response Frequencies This survey was conducted at the July 2003 American Association for Cancer Research (AACR) international conference in Washington, D.C. to help NCI and NDC better understand the needs of academic, government, and industrial researchers for human biospecimens, and results were provided to the National Biospecimen Network Design Team in their deliberations. The survey took respondents about 5-10 minutes to complete and could be returned to the Survey Collection Box at the NCI or Cooperative Human Tissue Network (CHTN) exhibit booths. Respondents were informed that individual responses would be kept confidential and would not be disclosed to anyone but the individuals conducting this survey, except as otherwise required by law. Participation was completely voluntary, and participants were told that they could skip any question they did not wish to answer. The response frequencies and percentages are shown below by question. Question Answers Total Percent Question 1 - Does your research involve the use of human biologic specimens, or are you planning to use such specimens? Yes, my research currently involves the use of human biologic specimens 188 75.2 Yes, I plan on using human biologic specimens in future research 51 20.4 No, my research does not involve the use of human biologic specimens (If no, the survey is completed, thank you for your time!) 11 4.4         Question 2 - What type of research are you doing? (check all that apply) Basic and developmental research 175 69.7 Translational research 87 34.7 Clinical research 57 22.7 Other (please specify) 7 2.8         Question 3 - What area of research are you working in? (check all that apply) Cancer prevention 74 29.5 Cancer epidemiology 34 13.5 Cancer etiology 47 18.7 Cancer diagnosis and detection 80 31.9 Cancer immunology 35 13.9 Cancer treatment 106 42.2 Other (please specify) 11 4.4         Question 4 - Which of the following cancers does your research include? (check all that apply) Bladder 20 8 Breast 126 50.6 Cervix 26 10.4 Colorectal 58 23.3 Endometrial 17 6.8 Esophagus 19 7.6 Head and Neck 36 14.5 Kidney 18 7.2 Lung 49 19.7 Lymphoma 34 13.7 Ovary 43 17.3 Pancreas 24 9.6 Prostate 79 31.7 Stomach 21 8.4 Other (please specify) 45 18.1         Question 5 - Which of the following best describes your research position? Principal Investigator 107 44.2 Postdoctoral fellow/Ph.D. student 100 41.3 Technician 13 5.4 Other (please specify) 22 9.1         Question 6 - Is your research funded by NIH? Yes 117 47.6 No 129 52.4         Question 7 - Is your research institution located in the United States? Yes 180 73.5 No (If no, where is your institution located?) 64 26.1         Question 8 - At what type of institution are you located? Academic 193 79.1 Government 19 7.8 Industrial 32 13.1         Question 8A - If industrial, which of the following best describes your industrial research institution? Start-up or smaller biologically related institution 8 32 Medium biologically related institution 9 36 Large biologically related institution 8 32         Question 9 - Is there a hospital associated with your research institution? Yes 183 75.3 No 60 24.7         Question 9A - If yes, approximately how many beds are in the hospital? Fewer than 200 beds 8 5.8 201-500 beds 47 33.8 More than 500 beds 84 60.4         Question 10 - What sources do you use to obtain specimens? (check all that apply) Your institution/hospital 167 69 NCI-supported resources 35 14.5 Commercial sources 43 17.8 Other researchers/collaborators 81 33.5 Other (please specify) 9 3.7         Question 11 - Which of the following types of tissue do you typically use or do you plan to use? (check all that apply) Frozen tumor (In OCT? ______) 157 66.8 Frozen uninvolved or normal (In OCT? ______) 58 24.7 Paraffin blocks/slides 130 55.3 Serum 85 36.2 Plasma 54 23 Buffy coat 30 12.8 Urine 17 7.2 Saliva 10 4.3 Other (please specify) 15 6.4         Question 12 - How many patient specimens do you typically require per year? 0 to 25 patient specimens 61 27 26 to 100 patient specimens 90 39.8 101 to 500 patient specimens 54 23.9 501 to 1,000 patient specimens 11 4.9 Greater than 1,000 patient specimens 10 4.4         Question 13 - What volume of tissue do you typically require per specimen? Less than 0.1 g 50 22.8 0.1-1.0 g 120 54.8 1.1-5.0 g 42 19.8 More than 5.0 g 7 3.2         Question 14 - Does the tissue you obtain currently meet your needs for:       Number of specimens? Yes 123 58.9 No 78 37.3         Volume of specimens? Yes 116 55.5 No 61 29.2         Quality of specimens? Yes 135 64.6 No 44 21.2         Question 15 - If a tissue bank outside of your institution provided the following derivatives and/or services, which would you use? (check all that apply) DNA 133 61.9 RNA 121 56.3 Protein 107 49.8 Tissue microarrays 101 47 Other (please specify) 6 2.8         For the remaining questions, “associated patient data” refers to demographic, clinical, and outcomes data related to the specimen. Examples of this type of data are listed as responses in Question 17.         Question 16 - How often do you require extensive associated patient data (i.e., demographic, clinical, outcomes, etc.) related to the specimen? Always 102 46.2 Sometimes 93 42.1 Never (SKIP TO QUESTION 18) 26 11.8         Question 17 - What associated patient data do you use or plan to use in your research? (check all that apply) Demographic 71 35 Family history 83 40.9 Histopathologic (i.e., diagnosis, stage, grade) 130 64 Time to progression 90 44.3 Treatment and response 137 67.5 Recurrence 93 45.8 Survival 118 58.1 Other (please specify) 1 0.5         Question 18 - What is the maximum you would pay for well-characterized biospecimen samples with definitive associated patient data? $20 to $100 per specimen 174 85.3 $101 to $300 per specimen 24 11.8 Greater than $300 per specimen 6 2.9         Question 19 - What research data would you like to have provided along with specimens? (check all that apply) Gene expression by DNA microarray (mRNA transcript expression profiles of approx. 30,000 genes) 148 70.1 Marker expression by fluorescence in situ hybridization 56 26.5 Marker expression by immunohistochemistry 101 47.9 Comprehensive protein expression data 82 38.9 Other (please specify) 4 1.9         Question 20 - What is the maximum you would pay for well-characterized biospecimen samples with definitive associated patient data and standardized gene expression by DNA microarray data? $100 to $500 per specimen 144 69.6 $501 to $1000 per specimen 32 15.5 Greater than $1000 per specimen 1 0.5 Don't need 30 14.5         Total Surveys Returned: 254

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