Index

A

Access to care, 81-82, 85, 109, 110, 114-115, 190

medically underserved persons, defined, 9, 39, 44-45

poverty and, 40-42, 43

special populations, general, 44, 45

see also Health insurance

Accountability, 10, 151

monitoring and reporting, 8, 138

NCI, 7, 129, 134, 138-140, 140-141, 152, 174

Acquired immunodeficiency syndrome,

see AIDS

Adolescents, 30, 101, 102-103, 120-121

Advisory bodies, 6, 11, 12, 100, 103, 156, 158-159, 166, 169-174, 184, 185, 186

Advisory Committee on Research on Minority Health, 100

African Americans, 14, 74, 117, 121-123, 215, 283

AIDS, 145, 146

Black Leadership Initiative on Cancer, 18, 24, 128, 129, 160

breast cancer, 1, 14, 28, 30, 57, 69, 72-73, 111, 112, 115, 116, 119, 126, 128-129, 163-164, 165, 201, 204, 215, 224, 302, 308

cancer incidence, 1, 52, 53, 60, 91, 111-113 (passim), 116-118, 142, 166, 200, 201

Cancer Prevention Awareness Program, 18

cervical and uterine cancer, 29, 53, 54, 56, 57, 116, 119, 123, 250, 303, 310

classification of, 3, 36, 82, 248

clinical trials, 14, 122-123, 124, 165, 188, 191, 195, 197-198, 200-211 (passim), 213

colorectal cancer, 58, 122-123

diet, 112-113, 121-122, 283

genetic research, 149-150, 166, 189

historically black colleges and universities, 135-136, 149, 153, 164, 165-166, 286, 288

human T-cell lymphotrophic virus, 114, 116

journal articles on, 224, 226-227, 239, 240-241

lung cancer, 52, 53, 115, 122-123

men, 1, 52, 53, 58, 109, 112, 163, 188, 197-198, 203, 206, 300-313

mortality, 1, 24, 28, 29, 30, 53, 58, 69, 72-73, 91, 129, 142, 163, 166, 252, 253, 300-313

pancreatic cancer, 118, 301, 309

patient education, 128

poor, 43, 49, 71-72, 91, 123

preventive measures, general, 18, 118-119, 136, 142, 207-211 (passim)



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Index A Access to care, 81-82, 85, 109, 110, 114-115, 190 medically underserved persons, defined, 9, 39, 44-45 poverty and, 40-42, 43 special populations, general, 44, 45 see also Health insurance Accountability, 10, 151 monitoring and reporting, 8, 138 NCI, 7, 129, 134, 138-140, 140-141, 152, 174 Acquired immunodeficiency syndrome, see AIDS Adolescents, 30, 101, 102-103, 120-121 Advisory bodies, 6, 11, 12, 100, 103, 156, 158-159, 166, 169-174, 184, 185, 186 Advisory Committee on Research on Minority Health, 100 African Americans, 14, 74, 117, 121-123, 215, 283 AIDS, 145, 146 Black Leadership Initiative on Cancer, 18, 24, 128, 129, 160 breast cancer, 1, 14, 28, 30, 57, 69, 72-73, 111, 112, 115, 116, 119, 126, 128-129, 163-164, 165, 201, 204, 215, 224, 302, 308 cancer incidence, 1, 52, 53, 60, 91, 111-113 (passim), 116-118, 142, 166, 200, 201 Cancer Prevention Awareness Program, 18 cervical and uterine cancer, 29, 53, 54, 56, 57, 116, 119, 123, 250, 303, 310 classification of, 3, 36, 82, 248 clinical trials, 14, 122-123, 124, 165, 188, 191, 195, 197-198, 200-211 (passim), 213 colorectal cancer, 58, 122-123 diet, 112-113, 121-122, 283 genetic research, 149-150, 166, 189 historically black colleges and universities, 135-136, 149, 153, 164, 165-166, 286, 288 human T-cell lymphotrophic virus, 114, 116 journal articles on, 224, 226-227, 239, 240-241 lung cancer, 52, 53, 115, 122-123 men, 1, 52, 53, 58, 109, 112, 163, 188, 197-198, 203, 206, 300-313 mortality, 1, 24, 28, 29, 30, 53, 58, 69, 72-73, 91, 129, 142, 163, 166, 252, 253, 300-313 pancreatic cancer, 118, 301, 309 patient education, 128 poor, 43, 49, 71-72, 91, 123 preventive measures, general, 18, 118-119, 136, 142, 207-211 (passim)

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prostate cancer, 53, 69, 109, 111-113, 115, 122, 197-198, 201, 224, 305, 312 public education, 18, 128, 129, 142 research involvement by professionals, 132, 134, 145, 156, 166, 172 rural areas, 9, 48-49, 53, 78, 113, 143-144 smoking, 29-30, 118-119, 120 surveillance, 3, 74, 109, 111-113, 115-118 (passim), 126, 128-129, 143-146, 149 SEER, 9, 24, 47, 48-49, 53, 58, 59, 60, 78, 82, 108, 111-112, 206, 210 survivorship, 57, 59, 82, 91, 111, 129, 142 urban areas, 49, 119, 129 women, 1, 14, 28, 30, 69, 112, 115, 116, 123, 126, 128-129, 163-164, 165, 201, 204, 205, 206, 210, 215, 250, 300-313 Aged persons, see Elderly persons Agency for Health Care Policy and Research, 115 Agricultural workers, 114, 117, 143-144 AIDS, 113-114, 116, 146 funding, 97, 99, 101, 102-103, 145 Alaska Natives, see American Indians/Alaska Natives Alcohol consumption, 116-117 Alternative therapies, see Natural remedies American Anthropological Association, 34, 83 American Cancer Society, 28, 40, 59, 60, 80, 120, 193, 194, 225, 240 American College of Surgeons, 59, 80 American Digestive Health Foundation, 117 American Indians/Alaska Natives, 19, 24, 123, 128, 130-131 Behavioral Risk Factor Surveillance Survey, 73 cancer incidence, 52, 61-62, 64, 65, 66-67, 113 cancer sites, various, 61-64, 66-67, 68, 109, 113, 114, 123 cervical and uterine cancer, 53, 54, 56, 57, 67, 303, 310 classification of, 3, 9, 34, 36, 44, 65, 82 clinical trials, recruitment, 124, 194-195 199, 201, 204, 208-209 defined, 36 diet, 119, 284 Indian Health Service, 64, 65, 112, 113, 199 journal articles on, 224-225, 226-227, 239, 240-241 leadership initiative, 24 mammography, 75, 76 men, 62-64, 65, 66, 300-313 mortality, 61, 62-64, 252-254, 300-313 poor, 43, 71-72 preventive measures, 61, 111, 119, 121, 130-131, 142, 208-209 public education, 121, 128, 129, 130-131, 216, 284 regional factors, 64, 65 research by and professional training for, 131, 132, 134, 156, 172 screening, 75, 76, 123, 128 smoking, 29-30, 119 surveillance, 61-64, 69, 74, 75, 111, 112, 113, 131 SEER, 9, 49, 52, 61-64, 65, 79, 107-108, 201 survival rates, 2, 61, 68, 88 women, 62-63, 64, 65, 67, 75, 204, 205, 300-313 American Stop Smoking Intervention Study, 120 Appalachia, 2, 9, 20, 24, 48, 52, 53, 61, 78, 128, 130, 155, 160, 165, 281 Appalachian Leadership Institute, 20, 24, 128, 130, 155, 160, 281 Asians/Pacific Islanders, 89, 114, 116, 117, 118, 189 cancer incidence, 1, 3, 53, 54, 60 cancer sites, 12, 55-56, 57, 116-117 Chinese, 49, 50, 52, 54-57, 83, 89, 107, 108, 116, 117, 123, 163 classification of, 34, 36, 44, 82, 83, 168 clinical trials, recruitment, 122, 123, 124, 196, 197, 201, 204, 208-209, 210 hepatitis and liver cancer, 12 journal articles on, 224, 226-227, 239, 240-241 leadership initiative, 131 mortality, 28, 55-56, 60, 253, 296, 300-313 poor, 43, 71-72 prevention, 120, 121 professional education, 132 researchers, 131, 132, 156, 171, 172 smoking, 30, 120, 197 surveillance, 60, 110 SEER, 49, 53, 60, 79, 107, 201

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survivorship, 57, 111 Vietnamese, 30, 123 women, 1, 28, 75-76, 116, 129, 164 Attitudes, 110, 128-129 fatalism, 14-15, 164, 196, 197-198, 240, 243 mistrust of research community, 188-189, 191, 195, 198, 210, 211-212, 229 poor persons, 41-42 research recommendations, 4, 7 survivors of cancer, 231, 240, 243, 244 see also Cultural factors B Behavioral risk factors, 15, 70, 73, 85, 282 alcohol consumption, 116-117 ''ethnic group" defined, 8-9 genetic vs, 4, 8, 44, 82-84, 85, 86, 89, 92 NCI programs, 5, 6, 10, 89-90, 110-111, 115, 151-153, 176 NIH, general, 15 poor persons, 40 see also Attitudes; Cultural factors; Diet and nutrition; Smoking; Social factors Behavioral Risk Factor Surveillance Survey, 73 Black Leadership Initiative on Cancer, 18, 24, 128, 129, 160 Blacks, see African Americans Black/White Cancer Survival Study, 111 Bladder cancer, 26, 124 Breast cancer, 19, 25, 164 African Americans, 1, 14, 28, 30, 57, 69, 72-73, 111, 112, 115, 116, 119, 126, 128-129, 163-164, 165, 201, 204, 215, 224, 302, 308 attitudes about, 128-129 clinical trials, 14, 30, 122, 124, 164, 165, 204, 208, 210 funding, 97, 99 genetics of, 85-86 Hispanics, 30, 69, 75, 76, 126, 164, 250, 302, 303, 308, 310 mortality, 1, 28-29, 56, 72-73, 250, 302, 308 prevention, 26, 30, 122 research, 54, 57, 62, 65, 67, 109, 111, 113, 115-116 screening, 219 see also Mammography survivorship, 231, 234, 240 tamoxifen, 14, 30, 122, 208, 210 treatment, 14, 30, 122, 208, 218 Breast Cancer Prevention Trial, 30, 122, 193 Breast Cancer Resource Committee, 163-164 Breast Cancer Surveillance Consortium, 81, 109, 122 Bronchial cancer, 52, 54-57, 60, 61, 66-67, 300, 307 Brownfields National Partnership Action Agenda, 144 Bureau of the Census, 110, 200, 252 C Cancer Control Review Group, 78, 84-85 Cancer Cooperative Group Trials, 32, 105, 106, 124, 125, 192, 193, 197, 200-206 Cancer Facts & Figures, 225 Cancer Incidence and Mortality, 1973-1995: A Report Card for the United States, 60 Cancer Information Service, 107, 127-128, 222-224, 238 CANCERLIT, 127, 225 CancerNet, 127 Cancer Prevention Awareness Program, 18 Cancer registries, 249-250 state, 4, 58-60, 64, 68, 79-80, 81 see also Surveillance, Epidemiology, and End Results program Cancer Survivorship Studies in Established Epidemiologic Cohorts, 235 Case-control studies, 109, 115, 116, 117, 118 Center for Scientific Review, 100 Centers for Disease Control and Prevention, 3, 28, 35, 60, 110, 208 Behavioral Risk Factor Surveillance Survey, 73 National Health and Nutrition Examination Survey, 73-74, 110 National Health Interview Survey, 110, 233, 244-245 state tumor registries, 58-60, 80 Cervical and uterine cancer, 50, 54, 56, 57, 60, 62, 116, 129, 152, 250, 303, 310 African Americans, 29, 53, 54, 56, 57, 116, 119, 123, 250, 303, 310 American Indians, 53, 54, 56, 57, 67, 303, 310 funding, 97, 99 Hispanics, 29, 30, 53, 54, 56, 57, 75, 76, 116, 164, 303, 310

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Pap smears, 30, 40, 50, 70, 73, 75, 76, 89, 115, 123, 129, 164, 167, 208, 219, 254, 256 quality of life, 233 Chemotherapy, 14, 30, 122, 196, 207-208 finasteride, 122, 208 tamoxifen, 14, 30, 122, 208, 210 Children, 26, 114, 121 adolescents, 30, 101, 102-103, 120-121 clinical trials, 124, 200, 202-203, 204, 211 Chinese, 49, 50, 52, 54-57, 83, 89, 107, 108, 116, 117, 123, 163 Clinical Investigator Award for Research on Special Populations, 133 Clinical practice guidelines, 214, 216, 217-222, 224, 228 survivorship, 233-234 Clinical trials, 13-14, 31, 104, 106, 115, 122, 124-125, 127, 187 African Americans, 14, 122-123, 124, 165, 188, 191, 195, 197-198, 200-211 (passim), 213 American Indians/Alaska Natives, 124, 194-195, 199, 201, 204, 208-209 Asians/Pacific Islanders, 122, 123, 124, 196, 197, 201, 204, 208-209, 210 breast cancer, 14, 30, 122, 124, 164, 165, 204, 208, 210 Cancer Cooperative Group Trials, 32, 105, 106, 124, 125, 192, 193, 197, 200-206 children, 124, 200, 202-203, 204, 211 Community Clinical Oncology Program, 106, 124-125, 192, 206-207, 210 cultural factors, 188-189, 191, 194-199, 210, 211-212, 213, 229 elderly persons, 196, 201, 205, 212 evaluation of data, 221 funding/financing, 7, 14, 97, 99, 101, 125, 189, 190, 191, 193, 195, 198, 199, 211, 229 gender factors, 190, 191 Hispanics, 123, 124, 146, 196-197, 200-203 (passim), 208-210 (passim) informed consent, 7, 14, 188-189, 192, 196, 198-199, 212, 229 insurance financing, 195, 211, 229 literacy issues, 191, 192, 199, 214 men, 188, 197-198, 203, 204-205, 206 minority group recruitment, 123, 124-125, 128, 192-194, 202, 206-214 see also specific groups supra mistrust of research community, 188-189, 191, 195, 198, 210, 211-212, 229 NIH policy, 187, 190-191, 211, 279 PLCO Cancer Screening Trial, 115, 122-123, 137, 193, 208, 213 poor persons, 112, 124, 189, 195, 211, 214 preventive interventions, 7, 14, 206, 207-211 professional education and, 213-214 recruitment and retention of minorities, 2, 7, 14, 19, 21, 98, 101 -102, 112, 123, 124-125, 128, 146-147, 164, 165, 177-178, 187-214, 225-226, 228-229 costs of, 190, 191, 195, 198, 199, 211, 229 NCI efforts, 123, 124-125, 128, 192-194, 202, 206-214, 225-226, 228 -229, 279 proportional representation, general, 193, 199-200 survivors of cancer, 196, 197-198 rural areas, 7, 124, 188, 214, 229 socioeconomic status, 190, 229 survivors of cancer, recruitment, 196, 197-198 urban areas, 7, 189, 197-198, 207, 229 women, 19, 112, 177, 178, 190, 191, 199, 200, 203, 204-205, 210 Clinical Trials Cooperative Group program, 106, 192, 193 Cohort studies, 109 Colorectal cancer, 29, 52, 54-57, 58, 60, 61, 62, 63, 64, 66-67, 117-118, 250, 302, 308 African Americans, 58, 122-123 clinical trials, 201, 204, 208 funding, 97, 99 screening, 115, 122-123, 137, 193, 208, 213, 218 Community-based programs, 17, 73, 103-107 (passim), 119, 120, 121, 124-125, 128, 129, 130, 141-142, 161-165, 168, 213, 287 professional education, 31, 187, 197, 198, 217-219 Community Clinical Oncology Program, 106, 124-125, 192, 206-207, 210, 219

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Comprehensive Minority Biomedical Section, 18, 131-132 Consortium Cancer Center, 18 Consumer information, see Public education Continuing Surveys of Food Intakes by Individuals, 110 Cooperative Minority Biomedical Program, 18 Cost and cost-benefit factors, 114-115, 168 breast cancer screening, 114-115 cancer, national cost, 45 clinical trials, recruitment, 190, 191, 195, 198, 199, 211, 229 survivors of cancer, 236 see also Funding; Health insurance Cultural factors, 111, 142, 176, 216, 260 clinical trials, 188-189, 191, 194-199, 210, 211-212, 213, 229 ethnicity defined, 8-9, 34, 35, 38 fatalism, 14-15, 164, 196, 197-198, 240, 243 genetic/behavioral vs, 4, 8, 44, 82-84, 85, 86, 89, 92 mistrust of research community, 188-189, 191, 195, 198, 210, 211-212, 229 public education and outreach, 128, 167, 284 religious factors, 35, 83, 121, 195-198 (passim), 213, 216, 230, 233 researchers' understanding of, 7, 10-11, 89-90, 194-199 survey instruments, 75, 110 survivors of cancer, 168, 233, 240-242 see also Attitudes; Language factors; Social factors Current Population Survey, 110 D Databases, 4, 9, 111, 127, 214, 225, 250, 280 CANCERLIT, 127, 225 clinical trials, 191 Internet, 127, 235, 294 MEDLINE, 214 PDQ, 127, 128, 225 see also Cancer registries; Surveillance, Epidemiology, and End Results program Data collection and surveillance, 3-4, 33-92 African Americans, 3, 74, 109, 111-113, 115-118 (passim), 126, 128 -129, 143-146, 149 classification of African Americans, 3, 36, 82, 248 SEER, 9, 24, 47, 48-49, 53, 58, 59, 60, 78, 82, 108, 111-112, 206, 210 American Indians/Alaska Natives, 61-64, 69, 74, 75, 111, 112, 113, 131 classification of American Indians, 3, 9, 34, 36, 44, 65, 82 Indian Health Service, 64, 65, 112, 113 SEER, 9, 49, 52, 61-64, 65, 79, 107-108, 201 annual reporting, 4, 92 Asians/Pacific Islanders, 60, 110 SEER, 49, 53, 60, 79, 107, 201 classification of, minority groups, 3, 8-9, 33-38, 44, 49-50, 65, 77, 82, 83, 196, 248-249, 254, 260 cultural factors in survey instruments, 75, 110 Hispanics, 74, 82, 90, 110, 114, 216 classification of Hispanics, 34, 36, 83, 196, 249, 254 SEER, 9, 47, 48, 49, 50, 52, 60, 78-79, 107, 108, 111-112, 206, 210 "medically undeserved" defined, 38-39 National Center for Health Statistics, 28, 46, 58, 60, 80, 108, 109, 250, 251-254 National Coordinating Council for Cancer Surveillance, 8, 80 National Health and Nutrition Examination Survey, 73-74, 110 National Health Interview Survey, 40, 74-75, 110, 233, 244-245 National Medical Expenditure Survey, 75 National Survey of Family Growth, 75-76 NCI, 3-4, 35, 78, 81, 107-112, 279 "special populations" defined, 4, 44-45, 80, 91, 162, 287 special studies by independent researchers, 65-70 survivorship, 111-112, 129, 142, 244 see also Cancer registries; Clinical trials; Monitoring and reporting; Research; Research recommendations; Statistical analyses; Surveillance, Epidemiology, and End Results program

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Department of Agriculture, 110 Department of Defense, 3, 125, 166 Department of Health and Human Services, 51, 216 see also National Cancer Institute; National Institutes of Health; other DHHS agencies Department of Veterans Affairs, 3, 109, 117-118, 166 Detroit Education and Early Detection program, 197-198 Diagnosis, see Mammography; Pap smears; Screening Diet and nutrition, 70, 110, 112-113, 115, 116, 117, 118, 120-122, 283-284 African Americans, 112-113, 121-122, 283 historical perspectives, 26, 30 National Health and Nutrition Examination Survey, 73-74, 110 poor persons, 40, 42 research recommendations, 4, 89, 92 Director's Consumer Liaison Group, 169, 170-171, 172, 185, 235, 237, 243 Division of Cancer Control and Population Science, 84, 88-89, 90, 108, 110, 111, 112, 152 Division of Cancer Epidemiology and Genetics, 108, 112, 113, 115-116 Division of Cancer Prevention, 104, 114, 115 Division of Clinical Sciences, 124 Drew-Meharry-Morehouse Consortium Cancer Center, 24 E Economic factors, see Cost and cost-benefit factors; Funding; Health insurance; Income; Poverty; Socioeconomic status Educational attainment, 39, 41, 42, 69, 75, 109, 111-112, 176 clinical trial representation, 205-206, 209 Education and training, see Patient education; Professional education; Public education Elderly persons, 115, 136, 254 African Americans, 123 breast cancer, 111 clinical trials, 196, 201, 205, 212 Medicare, 109, 115, 196, 211, 220 Employment and unemployment, 39, 42, 69 occupational risk factors, 24, 47, 69, 109, 114 Environmental exposure brownfields, 144 environmental justice, 142-143, 168 genetic factors vs, 85, 86 historical perspectives, 23-24, 26 occupational, 24, 47, 69, 109, 114 pesticides, 113, 117, 143-144 poor persons, 142-143, 168 research, general, 4, 113-118, 143, 144, 165, 168 Superfund sites, 144 see also Smoking Environmental justice, 142-143, 168 Environmental Protection Agency, 117, 143 Esophageal cancer, 26, 113, 117 Ethnic groups, see Minority groups Etiology, see Risk factors F Families of cancer patients, 25, 90, 93, 107, 114, 119, 121, 128, 196, 212, 230 Farm workers, see Agricultural workers Federal government role, see Funding; Legislation; specific departments and agencies Females, see Women Finasteride, 122, 208 Food and Drug Administration, 192 Funding, 9, 20, 94-103, 108, 129 AIDS, 97, 99, 101, 102-103, 145 clinical trials, 7, 14, 97, 99, 101, 125, 189, 190, 191, 193, 195, 198, 199, 211, 229 evaluation of research, 6 grant writing, 168 Health Care Financing Administration, 7, 109, 115, 229 historical perspectives, 17, 20, 21, 23 minority recruitment, 19, 20, 21 NCI, 7, 9-10, 12-13, 17, 94-97, 99, 108, 109-110, 134-142, 152 NIH, 10, 94-103, 137, 140-142, 145, 146, 148-149, 151, 211, 246-247 ORMH, 98, 100, 101-103, 150 percent relevancy accounting, 10, 129, 139, 140-141, 152 prevention, 94-95, 99, 102 prioritizing research, 103, 154-169, 174-186 professional education, 6, 10, 19, 20, 21, 94-96, 101-102, 106, 131 -134, 146-147 reporting, 246-247

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research, general, 7, 9-10, 12-13, 17, 94-95, 134-142, 145, 146, 148-149, 161 special populations, general, 109-110, 136 state tumor registries, 58-59 see also Accountability; Health Care Financing Administration G Gallbladder cancer, 66-67 Gender differences, 29, 178 clinical trials, 190, 191 see also Men; Women Genetic factors, 44, 45-46, 85-89, 106, 115, 116-117, 118, 126, 166, 237 African Americans, 149-150, 166, 189 attitudes regarding inferiority, 189 clinical trials, 189, 191, 214 cultural/behavioral vs, 4, 8, 44, 82-84, 85, 86, 89, 92 Division of Cancer Epidemiology and Genetics, 108, 112, 113, 115-116 environmental exposure and, 168 historical perspectives, 23, 25, 189 "racial groups" defined, 8-9 Genome research, 88, 101, 126, 149-150 Government role, see Federal government role; State government role Guide to Clinical Preventive Services, 216 H Health Care Financing Administration, 7, 109, 115, 229 Health insurance, 41, 111-112, 115 clinical trials, 195, 211, 229 Health Care Financing Administration role, 7 managed care, 115, 168-169, 211 Medicaid, 211, 217-218 Medicare, 109, 115, 196, 211, 220 uninsured/underinsured persons, 2, 9, 39, 41, 44, 189 Health maintenance organizations, 115, 211 Health United States, 1998, 250 Healthy People 2000, 29-30, 31, 254 Heckler Report, 18 Hepatitis, 12 Hispanic Cancer Network, 281 Hispanic Leadership Initiative on Cancer, 24, 128, 129-130, 160 Hispanic persons, 19, 74, 110, 114, 121, 122, 142 advisory bodies, 171, 172 AIDS, 146 attitudes, 164, 196-197 breast cancer, 30, 69, 75, 76, 126, 164, 250, 302, 308, 303, 310 cancer incidence, 1, 28, 44, 52, 53, 60, 116, 200, 201 cervical and uterine cancer, 29, 30, 53, 54, 56, 57, 75, 76, 116, 164, 303, 310 classification of, 34, 36, 83, 196, 249, 254 clinical trials, 123, 124, 146, 196-197, 200-205 (passim), 208-210 (passim) Hispanic Leadership Initiative on Cancer, 24, 128, 129-130, 160 journal articles on, 224, 226-227, 239, 240-241 mortality, 29, 44, 253, 254, 300-313 poor, 42, 43, 71-72 preventive interventions, 118-120, 121, 128, 136, 142, 208-210 (passim) public education, 14, 20, 127-130, 136 research professionals, 132, 134, 147, 162 screening, 75, 76, 122 smoking, 29-30, 119 surveillance, 74, 82, 90, 110, 114, 216 SEER, 9, 47, 48, 49, 50, 52, 60, 78-79, 107, 108, 111-112, 206, 210 survivorship, 57, 68, 240-241 uninsured, 43 women, 75, 89, 210, 300-313 see also Mexican Americans Historical perspectives, viii, 16-32 black educational institutions, 135-136, 149, 153, 164, 165-166, 286, 288 clinical trials, 90, 188-189, 190 data collection categories, 3, 8, 33-34 funding, 17, 20, 21, 23 genetic factors, 23, 25, 189 lung cancer, 16, 26, 27 mortality rates, 16, 26, 27, 28 National Cancer Program, 18-22 NCI, 16, 17, 19-22, 23, 27-32, 93-103 ORMH, 19-20, 97-98 preventive interventions, 18, 24-25, 26-27 professional education, 16, 19, 20, 21, 22, 93-94 public education, 16, 20, 27 smoking, 18, 23, 26, 27, 28, 29-30, 31 special populations, 21-22, 24, 27 treatment, 26, 27 see also Projections Human Genome Project, 87, 88

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Human papillomavirus, 114, 116 Human T-cell lymphotrophic virus, 114, 116 I Illiteracy, see Literacy Incidence rates, 60, 85 African Americans, 1, 52, 53, 60, 91, 111-113 (passim), 116-118, 142, 166, 200, 201 American Indians/Alaska Natives, 52, 61-62, 64, 65, 66-67, 113 Asians/Pacific Islanders, 1, 3, 53, 54, 60 clinical trial representation, 200, 201, 207, 208, 209-210 Hispanics, 1, 28, 44, 52, 53, 60, 116, 200, 201 methodological difficulties, 46, 77-78 minorities, general, 1, 44, 52-53, 54, 60-61, 76-77, 116, 150-151, 173, 174, 246-247, 250, 255 see also specific groups supra NIH monitoring, 15, 150-151 NIH reporting, 8, 9, 246-247, 260 poor persons, 2, 40, 52 reporting, 8, 9, 246-247, 250, 255, 260 SEER, 9, 46, 50, 52-53, 54, 58, 255 "special populations" defined, 45 Income, 69, 109, 111-112 see also Poverty Indian Health Service, 64, 65, 112, 113, 199 Information dissemination, see Patient education; Professional education; Public education Informed consent, 7, 14, 188-189, 192, 196, 198-199, 212, 229 Insurance, see Health insurance Intercultural Cancer Council, 29, 281 International Cancer Information Center, 107, 127 Internet, 127, 235, 294 Investigator-initiated, 94, 105, 137, 147, 181, 183, 185, 186, 234, 257 K Kidney cancer, 61, 62, 63, 304, 311 L Language factors, 10-11, 14, 110, 125, 164, 192, 196, 213, 216, 240-241, 284 see also Literacy Legislation historical perspectives, 16-17 National Cancer Act, vii, 17, 18, 93 National Cancer Institute Act, vii, 16, 18 National Health Planning Resources Act, 17 NIH Revitalization Act, 19, 25, 97-98, 177, 190, 191 Public Health Service Act, 17 Leukemia, 114, 201, 205 Life expectancy, 16 see also Survivorship and survival rates Lifestyle risk factors, see Behavioral risk factors Literacy, 44, 125, 165 clinical trials, 191, 192, 199, 214 research, understanding of, 7 Liver cancer, 62, 306, 313 funding, 97, 99 hepatitis and, 12 Low-income persons, see Poverty Lung cancer, 57, 115, 124, 201 African Americans, 52, 53, 115, 122-123 funding, 97 historical perspective, 16, 26, 27 incidence, 52, 54, 60, 61-62, 66-67, 250 mortality rates, 27, 31, 55, 56, 63, 300, 307 PLCO Cancer Screening Trial, 115, 122-123, 137, 193, 208, 213 poor persons, 2 screening, 122-123 women, 50, 56 see also Smoking Lymphoma, 114, 116, 124 M Mammography, 26, 28-29, 30, 70, 75, 81, 89, 109, 111, 113, 119, 129, 164, 215, 217, 219, 254, 256, 284 poor persons, 40 Managed care, 168-169, 211 health maintenance organizations, 115, 169 Mapping by Admixture Lineage Disequilibrium, 126 Measuring the Progress Against Cancer, 31 Media campaigns, 121, 128, 222 Medicaid, 211, 217-218 Medical services, see Access to care; Health insurance; Treatment Medicare, 109, 115, 196, 211, 220 MEDLINE, 214 Men, 2, 64, 252 African Americans, 1, 52, 53, 58, 109, 112, 163, 188, 197-198, 203, 206, 300-313 American Indians/Alaska Natives, 62-64, 65, 66, 300-313

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clinical trials, 188, 197-198, 203, 204-205, 206 statistics by race/ethnicity and cancer site, 55, 253, 300-313 see also Gender differences; Prostate cancer Mentored Career Development Awards, 133 Mentored Research Scientist Development Award, 133-134 Metropolitan areas, see Urban areas Mexican Americans, 1, 34, 38, 42, 43, 44, 49, 69, 89, 102, 108, 109, 111, 112, 164, 224, 227, 239, 247 Minority-Based Community Clinical Oncology Programs, 106, 124-125, 192, 206-207, 210 Minority Access to Research Careers Summer Research Training Program, 133 Minority Adolescent HIV Prevention and Treatment Project, 101, 102-103 Minority groups, general, 53 advisory bodies, 11, 12, 100, 103, 156, 158-159, 166, 169-173, 174, 184, 185, 186 classification of, 3, 8, 33-38, 44, 49-50, 77, 82-84, 248-249, 260 clinical trials, recruitment, 123, 124-125, 128, 192-194, 202, 206-214 costs of, 190, 191, 195, 198, 199, 211, 229 NCI efforts, 123, 124-125, 128, 192-194, 202, 206-214, 225-226, 228-229, 279 proportional representation, general, 193, 199-200 data collection and surveillance, 3-4, 35, 78, 81, 107-112 other than SEER, 58-78, 107-112 SEER, 46-69, 107-108, 109, 111-112 geographic distribution of cancers, 108-109 historical perspectives, 18-32 incidence, 1, 44, 52-53, 54, 60-61, 76-77, 116, 150-151, 173, 174, 246-247, 250, 255 journal articles on, 224-225, 226-227, 239, 240-241, 294 mortality, 1, 16, 26, 27, 28, 29, 32, 44, 52-53, 54, 55, 60-61, 76-77, 116, 150-151, 173, 174, 246-247, 250, 252-255, 296-313 NCI research review, viii, 2-3, 9-16, 23-32, 89-92, 93-97, 104-126,135-141 see also "data collection …" supra NIH research review, other than NCI, 96-104, 141-150 poverty and, 42-44, 71-72, 123, 165 prioritizing research, 103, 154-169, 174-186 professional education, representation and recruitment, 6, 11, 19, 20, 21, 22, 101-102, 131-135, 143, 145, 146-147, 153, 159-160, 285-286 reporting, 15, 228, 246-247 smoking, 29-30, 110, 118-119 survivorship, 1-2, 4, 7-8, 9, 15, 46, 50, 51, 53, 57, 58, 65, 68-69, 72, 81-82, 104, 110, 111, 128, 130, 131, 154, 162, 167-168, 198, 234-245 see also Cultural factors; Office of Research on Minority Health; Special populations; specific groups Minority Health Initiative project, 5, 100-101, 104, 151 Minority Oncology Leadership Academic Award, 133 Mississippi Delta Project, 144 Monitoring and reporting, 228, 246-260 accountability, 8, 138 incidence, general, 8, 9, 246-247, 250, 255, 260 mortality, general, 250-255, 256, 257-258, 260 NCI role, 246, 248, 249, 257-258, 260 NIH, 8, 15, 228, 246-247, 257, 260 annual reports on research, viii, 4, 92, 138 preventive interventions, 251, 258, 260 racial/ethnic classifications, 3, 8-9, 33-38, 44, 49-50, 65, 77, 82, 83, 196, 248-249, 254, 260 treatments, 251, 255-256, 258, 260 see also Data collection and surveillance Morbidity rates, 1, 215 cervical cancer, 208 special populations defined, 45 see also Quality of life Mortality rates, 208 African Americans, 1, 24, 28, 29, 30, 53, 58, 69, 72-73, 91, 129, 142, 163, 166, 252, 253, 300-313 American Indians/Alaska Natives, 61, 62-64, 252-254, 300-313

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Asians/Pacific Islanders, 28, 55-56, 60, 253, 296, 300-313 breast cancer, 1, 28-29, 56, 72-73, 250, 302, 308 general population, 1, 16, 28, 29, 45, 55, 58 Hispanics, 29, 44, 253, 254, 300-313 historical perspectives, 16, 26, 27, 28 methodology, 296-299 minorities, general, 1, 16, 26, 27, 28, 29, 32, 44, 52-53, 54, 55, 60-61, 76-77, 116, 150-151, 173, 174, 246-247, 250, 252-255, 296-313 NIH, 8, 15, 150-151 oral cancer, 30 poor persons, general, 2, 24, 32 poverty and, 2, 24, 32 reporting, 250-255, 256, 257-258, 260 SEER, 9, 46, 50-51, 53, 55, 58, 60-61 smoking and, 26, 28 "special populations" defined, 45 see also Life expectancy; Survivorship and survival rates Multiethnic/Minority Cohort Study, 112-113 Myeloma, 113, 118 N Nasopharyngeal cancer, 63, 116, 305, 312 National Association of Central Cancer Registries, 79-80 National Black Leadership Initiative on Cancer, 18, 24, 128, 129, 160 National Cancer Act, vii, 17, 18, 93 National Cancer Advisory Board, 17, 18, 174, 194 National Cancer Institute (NCI), vii, viii, 2-3 accountability, 7, 129, 134, 138-140, 140-141, 152, 174 advisory bodies, 6, 11, 12, 100, 103, 156, 158-159, 166, 169-174, 184, 185, 186 behavioral research, 5, 6, 10, 89-90, 110-111, 115, 151-153, 176 cancer centers, 31, 105-106, 193 clinical practice guidelines, 216, 218 clinical trials, minority recruitment, 123, 124-125, 128, 192-194, 202, 206-214, 225-226, 228-229, 279 data collection and surveillance, 3-4, 35, 78, 81, 107-112, 279 see also Surveillance, Epidemiology, and End Results program environmental exposure, 113-118, 168 extramural research, 104, 105-107, 136-137 funding, 7, 9-10, 12-13, 17, 94-97, 99, 108, 109-110, 134-142, 152 see also "prioritizing research" infra historical perspectives, 16, 17, 19-22, 23, 27-32, 93-103 intra-agency coordination, 9-10, 97, 174 mission, 93-94, 175-177, 179 poor persons, 42, 44 preventive interventions, 24-25, 30, 93, 118-124, 126 prioritizing research, 2, 5, 12-13, 172-186, 278 professional education, 10, 19, 20, 21, 22, 93-96, 101-102, 104-105, 106, 107, 131-135, 215, 279-280 Cancer Information Service, 107, 127-128, 222-224, 238 public information and outreach, 14-15, 93, 94, 107, 127-131, 215, 283-284 reporting by, 246, 248, 249, 257-258, 260 research review, viii, 2-3, 9-16, 23-32, 89-92, 93-97, 104-126, 278 social factors, general, 5, 6, 10-11, 151-152 Special Action Committee, 12 special populations, 44-45 survivorship efforts, 15, 110, 111, 128, 130, 131, 234-235, 237-239, 243-245, 280, 293-294 see also subordinate units National Cancer Institute Act, vii, 16, 18 National Cancer Plan, 3 National Cancer Program, 3, 17 historical highlights, 18-22 National Cancer Registrars Association, 59, 80 National Center for Health Statistics, 28, 46, 58, 60, 80, 108, 109, 250, 251-254 National Coalition of Cancer Survivorship, 233-234 National Coalition of Hispanic Health and Human Service Organizations, 130 National Comprehensive Cancer Network, 221 National Conference on the Recruitment and Retention of Minority

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Participants in Clinical Cancer Research, 20 National Coordinating Council for Cancer Surveillance, 8, 80 National Health and Nutrition Examination Survey, 73-74, 110 National Health Interview Survey, 40, 74-75, 110, 233, 244-245 National Health Planning Resources Act, 17 National Heart, Lung, and Blood Institute, 148-149 National Hispanic Leadership Initiative on Cancer, 24, 128, 129-130, 160 National Human Genome Research Institute, 149-150, 153 National Institute for General Medical Sciences, 133, 135 National Institute for Occupational Safety and Health, 109 National Institute of Allergies and Infectious Diseases, 97, 117, 145-147, 148 National Institute of Arthritis and Musculoskeletal and Skin Diseases, 149 National Institute of Child Health and Human Development, 114 National Institute of Environmental Health Sciences, 97, 141-147 National Institute of Mental Health, 147 National Institute on Aging, 115, 149 National Institute on Diabetes and Digestive and Kidney Diseases, 97, 117, 147-148 National Institutes of Health (NIH) advisory bodies, 6, 11, 12, 100, 103, 156, 158-159, 166, 169-174, 184, 185, 186 agency coordination, 5, 6, 8, 9-10, 97-98, 100, 103, 130, 151, 174 clinical trials, policy, 187, 190-191, 211, 279 environmental risk factors, 168 funding, 10, 94-103, 137, 140-142, 145, 146, 148-149, 151, 211, 246-247 historical perspective, 18-23 mission, 175-177, 179 peer review, 105, 147, 157-159 prioritizing research, 103, 154-169, 174-186, 278, 286-287 professional training, 11, 132, 153, 159-160, 279-280 reporting, 8, 15, 228, 246-247, 257, 260 annual reports on research, viii, 4, 92, 138 research review, viii, 2-3, 9-16, 93-153, 278-279 special populations defined, 44-45, 162 survivorship policy, 104, 154, 162, 230-231, 236, 239-244, 293-294 see also National Cancer Institute; other specific agencies National Institutes of Health Revitalization Act, 19, 25, 97-98, 177, 190, 191 National Medical Expenditure Survey, 75 National Panel of Consultants on the Conquest of Cancer, 17 National Program of Cancer Registries, 79 National Survey of Family Growth, 75-76 Native Americans, see American Indians/Alaska Natives Natural remedies, 28, 233 Network for Cancer Control Research, 19, 130-131 North American Association of Central Cancer Registries, 4, 59, 79, 92 Nutrition, see Diet and nutrition O Office of Cancer Communications, 127, 129 Office of Cancer Information, Communication, and Education, 107, 127, 128, 243 Office of Cancer Survivorship, 234, 243, 293 Office of Management and Budget, 3 data collection, racial groups defined, 8-9, 33-34, 36-37, 82, 248-249 Office of Protection from Research Risks, 19, 192 Office of Research on Minority Health (ORMH), 97-104, 117, 125, 147, 151, 192 funding, 98, 100, 101-103, 150 historical perspectives, 19-20, 97-98 research prioritizing, 169-170 research recommendations, 5, 12-13, 103-104 Office of Research on Women's Health, 19, 193, 194 Office of Special Populations Research, 6, 13, 132, 153, 169, 170, 174, 184, 186

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Oral cancer, 26, 30, 116-117 Ovarian cancer, 62, 97, 115, 122, 124, 193, 206, 237, 301, 309 PLCO Cancer Screening Trial, 115, 122-123, 137, 193, 208, 213 P Pacific Islanders, see Asians/Pacific Islanders Pain and pain management, 179, 180, 230, 231, 232, 236 Pancreatic cancer, 113, 118, 301, 309 African Americans, 118, 301, 309 Pap smears, 30, 40, 50, 70, 73, 75, 76, 89, 115, 123, 129, 164, 167, 208, 219, 254, 256 Partnerships for Communication, 142-143 Patient education, 128, 191-193, 217, 221-222, 233-234 informed consent, 7, 14, 188-189, 192, 196, 198-199, 212, 229 PDQ, 127, 128, 225 Peer review, 105, 147, 157-159 Percent relevancy accounting, 10, 129, 139, 140-141, 152 Pesticides, 113, 117, 143-144 Pharyngeal cancer, 26, 63 Political factors clinical trials, 213 data collection categories, 3, 8, 82 Poverty, 2, 39-44, 69-70, 91, 163 African Americans, 43, 49, 71-72, 91, 123 American Indians, 43, 71-72 Asians/Pacific Islanders, 43, 71-72 clinical trials, 112, 124, 189, 195, 211, 214 diet, 120 environmental exposure, 142-143, 168 Hispanics, 42, 43, 71-72 insurance, other than Medicaid, 2, 218 Medicaid, 211, 217-218 "medically underserved persons" defined, 9, 39, 44 minority status and, 42-44, 71-72, 123, 165 mortality, general, 2, 24, 32 preventive interventions, 40, 142 prioritizing research, 163, 165, 176 public education, 40, 225 rural areas, 43, 60 SEER, 9, 40, 49, 52, 78-79 smoking and, 119-120 by state, 71-72 treatment of poor persons, 40, 41-42 uninsured/underinsured persons, 2, 9, 39, 41, 44, 189 white persons, 43, 79 President's Cancer Panel, 17 President's Commission on Heart Disease, Cancer, and Stroke, 17 Preventive interventions, 50, 70, 81, 84-85, 93, 118-123, 127, 142 African Americans, 18, 118-119, 136, 142, 207-211 (passim) American Indians, 61, 111, 119, 121, 130-131, 142, 208-209 Asians/Pacific Islanders, 120, 121 breast cancer, 14, 30, 122, 208, 210 clinical trials, 7, 14, 206, 207-211 funding, 94-95, 99, 102 Hispanics, 118-120, 121, 128, 136, 142, 208-210 (passim) historical perspectives, 18, 24-25, 26-27 NCI role, 24-25, 30, 93, 118-124, 126 poor persons, 40, 142 reporting on, 251, 258, 260 SEER, 50, 51 smoking, 118-120, 161, 197, 254 see also Public education; Risk factors; Screening Preventive Services Task Force, 216 Professional education, 6, 214-229 clinical practice guidelines, 214, 216, 217-222, 224, 228, 233-234 clinical trials, 213-214 community-based providers, 31, 187, 197, 198, 217-219 databases, 127, 128, 191, 214, 225 environmental exposures, 143 funding, 6, 10, 19, 20, 21, 94-96, 101-102, 106, 131-134, 146-147 historical perspective, 16, 19, 20, 21, 22, 93-94 journals, 219, 224-225, 226-227, 235, 238-239, 240-241 minority representation, 6, 11, 19, 20, 21, 22, 101-102, 131-135, 143, 145, 146-147, 153, 159-160, 285-286 NCI efforts, 10, 19, 20, 21, 22, 93-96, 101-102, 104-105, 106, 107, 131-135, 215, 279-280 Cancer Information Service, 107, 127-128, 222-224, 238 NIH efforts, not NCI, 11, 132, 153, 159-160, 279-280 regional medical programs, 17 SEER, 47

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Projections Healthy People 2000, 29-30, 31, 254 mortality, 1, 29 Prostate cancer, 28, 52, 53, 55, 61, 62, 66, 69, 109, 112-113, 115, 122, 124, 222, 250, 305, 312 African Americans, 53, 69, 109, 111-113, 115, 122, 197-198, 201, 224, 305, 312 clinical trials, 115, 122-123, 137, 183, 193, 201, 208, 209-210, 213 finasteride, 122, 208 funding, 97, 99, 102 Prostate Cancer Clinical Trial, 122, 183 Prostate Cancer Outcomes Study, 111-112 Prostate Cancer Prevention Trial, 193, 208, 209-210 Prostate, Lung, Colon, and Ovarian (PLCO) Cancer Screening Trial, 115, 122-123, 137, 193, 208, 213 Public education, 2-3, 7, 13, 14-15, 93, 94, 107, 127-131, 141-142, 214, 228 African Americans, 18, 128, 129, 142 American Indians, 121, 128, 129, 130-131, 216, 284 Cancer Information Service, 107, 127-128, 222-224, 238 clinical trials, outreach, 191-193 cultural factors, 128, 167, 284 evaluation of, 14-15, 166-167 Hispanics, 14, 20, 127-130, 136 historical perspectives, 16, 20, 27 media campaigns, 121, 128, 222 NCI role, 14-15, 93, 94, 107, 127-131, 215, 283-284 poor persons, 40, 225 survivors of cancer, 15, 167, 238, 240-245 telephone services, 107, 119, 122, 127-128, 222-224, 238 see also Patient education Public Health Service Act, 17 Puerto Ricans, 47, 49, 74 Q Quality of life, 26, 27, 46, 111-112, 173, 198, 230, 231, 232-233, 235, 236, 244, 255, 256, 258 see also Morbidity rates R Race/ethnicity, see Minority groups Racial/Ethnic Patterns of Cancer in the United States, 1988-1992, 248, 255 Regional factors, 17, 35, 47, 49, 78-79, 108-109 American Indians, 64, 65 Appalachia, 2, 9, 20, 24, 48, 52, 53, 61, 78, 128, 130, 155, 160, 165, 281 clinical trials, 204-206 smoking, 19 see also Rural areas; Urban areas Registries, see Cancer registries Religious factors, 35, 83, 121, 195-198 (passim), 213, 216, 230, 233 quality of life, 233 Reporting, see Monitoring and reporting Research, past and present, viii, 17, 226-229 advisory bodies, 11, 12, 100, 103, 156, 158-159, 166, 169-174, 184, 185, 186 case-control studies, 109, 115, 116, 117, 118 cultural factors, individual researchers' understanding of, 7, 10-11, 89-90, 194-199 dissemination of, 2-3, 13, 17, 24, 27, 107, 129, 187, 214-229 see also Patient education; Professional education; Public education environmental exposure, general, 4, 143, 113-118, 144, 165, 168 funding, general, 7, 9-10, 12-13, 17, 94-95, 134-142, 145, 146, 148-149, 161 historical summary, 18-32 investigator-initiated, 94, 105, 137, 147, 181, 183, 185, 186, 234, 257 minority involvement, 20, 106, 133-139, 146-148, 149, 150, 153, 161-162, 169-174, 186, 194, 198, 257, 260 African-American educational institutions, 135-136, 149, 153, 164, 165-166, 286, 288 African Americans, 132, 134, 145, 156, 166, 172 American Indians, 131, 132, 134, 156, 172 Asians/Pacific Islanders, 131, 132, 156, 171, 172 Hispanics, 132, 134, 147, 162 NCI review, viii, 2-3, 9-16, 23-32, 89-92, 93-97, 104-126, 278 NIH review, not NCI, viii, 2-3, 9-16, 93-153, 278-279

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peer review, 105, 147, 157-159 prioritizing, 103, 154-169, 174-186, 286-287 report at hand, methodology, vii-viii, 2-3, 155-157, 236, 238-239, 246, 277-281, 289-292, 296-299 risk factors, general, 84-91 survivorship, general, 2, 21, 110, 236 see also Clinical trials; Data collection and surveillance; Statistical analyses Research Centers in Minority Institutions, 146 Research Enhancement Awards Program, 12, 103, 151 Research recommendations, 4-8, 79, 80, 82, 91-92, 140, 151-153, 260, 282 accounting, 140 advisory bodies, 172-174 behavioral factors, 4, 91 clinical trials, 211-214 cultural factors, 4, 83-84, 91 evaluation of research, 5, 6, 7, 10 minority professionals involved in research, 6, 11, 161-162, 166, 198, 260, 285-288 patient understanding/consent, 7, 212, 229 prioritizing research, 2, 5, 12-13, 165-169, 172-186 reporting of results, 260 SEER, 4, 79-80, 91 ''special population" defined, 91 Research Supplements for Under-represented Minorities, 146 Risk factors, general, 3, 4-5, 10, 27, 70, 78 occupational, 24, 47, 69, 109, 114 SEER, 47 see also Behavioral risk factors; Environmental exposure; Genetic factors; Screening Rural areas, 9, 39, 114, 136, 144 African Americans, 9, 48-49, 53, 78, 113, 143-144 agricultural workers, 114, 117, 143-144 Appalachia, 2, 9, 20, 24, 48, 52, 53, 61, 78, 128, 130, 155, 160, 165 brownfields, 144 cervical cancer, 53 clinical trials, 7, 124, 188, 214, 229 diagnosis and treatment, 115 poverty in, 43, 60, 115 prioritization of research, 155, 160, 163, 165, 171 SEER, 9, 48-49, 60, 78 S Sampling, 14, 34, 49, 74, 77, 139, 155-156, 197, 205, 206, 216, 234 see also "minority group recruitment" under "Clinical trials" Science Enrichment Program, 132-133 Screening, 25-26, 28-29, 68, 69, 70, 72-75, 81, 85, 109, 110, 122-126, 128, 219, 242, 251, 282 clinical practice guidelines, 217-218, 219 followup services, 167 PLCO Cancer Screening Trial, 115, 122-123, 137, 193, 208, 213 rural areas, 115 see also Mammography; Pap smears; Risk factors SEER, see Surveillance, Epidemiology, and End Results program Setting Research Priorities at the National Institutes of Health, 179 Small business grants, 136 Smoking, 70, 110, 116, 118, 161 African Americans, 29-30, 118-119, 120 American Indians, 29-30, 119 Asians/Pacific Islanders, 30, 120, 197 Hispanics, 29-30, 119 historical perspectives, 18, 23, 26, 27, 28, 29-30, 31 minorities, general, 29-30, 110, 118-119 mortality and, 26, 28 poverty and, 119-120 preventive interventions, 118-120, 161, 197, 254 secondhand, 26 women, 50 Social factors, 42 data collection categories, 3, 8, 82 environmental justice, 142-143 NCI program, 5, 6, 10-11, 151-152 SEER, 46, 47, 79 survivorship, 231, 243 see also Cultural factors; Families of cancer patients Socioeconomic status, 39-44, 69-70, 85, 109, 111, 114, 176 clinical trial participants, 190, 229 medically underserved defined, 39 see also Educational attainment; Income; Poverty Southwest Oncology Group, 205, 206

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Special populations, general definition of, 4, 44-45, 80, 91, 162, 287 funding, 109-110, 136 historical perspectives, 21-22, 24, 27 NIH receptivity to research, 159, 166 Office of Special Populations Research, 6, 13, 132, 153, 169, 170, 174, 184, 186 research prioritization, 12, 21-22, 154-155, 174-185, 186 SEER, 46, 78-80 see also Elderly persons; Minority groups; Poverty; Rural areas State government role Behavioral Risk Factor Surveillance Survey, 73 clinical practice guidelines, 214, 216, 217-221, 224, 228, 233-234 tumor registries, 4, 58-60, 64, 68, 79-80, 81 Statistical analyses, 29, 248-249 classification of minority groups, 3, 8-9, 33-38, 44, 49-50, 65, 77, 82, 83, 196, 248-249, 254, 260 clinical trial data, 221 data collection standards, general, 79 genetic factors, 86-88 sampling, 14, 34, 49, 74, 77, 139, 155-156, 197, 205, 206, 216, 234 see also "minority group recruitment" under "Clinical trials" "special populations" defined, 4, 44-45, 80, 91, 162, 287 Stomach cancer, 52, 53, 54-56, 63, 66-67, 109, 117, 303, 310 Surgeon General of the U.S., 16, 18 Surveillance, see Data collection and surveillance Surveillance, Epidemiology, and End Results (SEER) program, 4, 9, 46-69, 78-80, 82, 91-92, 107-108, 109 African Americans, 9, 24, 47, 48-49, 53, 58, 59, 60, 78, 82, 108, 111-112, 206, 210 American Indians/Alaska Natives, 9, 49, 52, 61-64, 65, 79, 107-108, 201 Asians/Pacific Islanders, 49, 53, 60, 79, 107, 201 classification of minority groups, 49-50, 248 clinical trials, minority representation, 199-200, 201, 205, 206 data collection methods, 111-112, 129, 142, 244 geographic scope, 47-48, 107, 108 goals, 46-47 Hispanics, 9, 47, 48, 49, 50, 52, 60, 78-79, 107, 108, 111-112, 206, 210 historical perspectives, 18, 19, 24, 31 incidence, 9, 46, 50, 52-53, 54, 58, 255 "medically underserved" persons, defined, 9 mortality, 9, 46, 50-51, 53, 55, 58, 60-61 NIH monitoring, 15 poor persons, 9, 40, 49, 52, 78-79 preventive interventions, 50, 51 research recommendations, 4, 79-80, 91 rural areas, 9, 48-49, 60, 78 social factors, 46, 47, 79 special populations, general, 46, 78-80 state registries and, 4, 59-60, 64, 68, 79-80 survivorship, 9, 46, 50, 51, 53, 57, 58, 65-66, 82, 255 urban areas, 47, 49, 107, 108 Surveillance Implementation Review Group, 78, 81 Survivorship and survival rates, 2, 15, 21, 58, 110, 111, 136, 167-168, 230-245 African Americans, 57, 59, 82, 91, 111, 129, 142 American Indians/Alaska Natives, 2, 61, 68, 88 Asians/Pacific Islanders, 57, 111 breast cancer, 231, 234, 240 children, 211 clinical practice guidelines, 233-234 clinical trials, recruitment, 196, 197-198 cultural factors, 168, 233, 240-242 defined, 231 fatalism, 14-15, 164, 196, 197-198, 240, 243 Hispanics, 57, 68, 240-241 minorities, general, 1-2, 4, 7-8, 9, 15, 46, 50, 51, 53, 57, 58, 65, 68-69, 72, 81-82, 104, 110, 111, 128, 130, 131, 154, 162, 167-168, 198, 234-245 National Coalition of Cancer Survivorship, 233-234 NCI role, 15, 110, 111, 128, 130, 131, 234-235, 237-239, 243-245, 280, 293-294

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NIH role, not NCI, 104, 154, 162, 230-231, 236, 239-244, 293-294 pain and pain management, 179, 180, 230, 231, 232, 236 prioritizing research, survivor involvement, 154, 162-169, 171 public education, 15, 167, 238, 240-245 quality of life, 26, 27, 46, 111-112, 173, 198, 230, 231, 232-233, 235, 236, 244, 255, 256, 258 recommendations, 7-8, 171, 242-245 reporting, 255-256 SEER, 9, 46, 50, 51, 53, 57, 58, 65-66, 82, 255 social factors, general, 231, 243 "special populations" defined, 45 see also Families of cancer patients; Morbidity rates; Mortality rates T Tamoxifen, 14, 30, 122, 208, 210 Telephone services, 107, 119, 122, 127, 223, 238 Cancer Information Service, 107, 127-128, 222-224, 238 Tobacco, see Smoking Training, see Patient education; Professional education; Public education Treatment, 69-70, 81, 93, 126, 212, 231, 242 AIDS-related cancers, 103, 146 American Indians, 61 chemotherapy, 14, 30, 122, 196, 207-208, 210 clinical practice guidelines, 217, 218 databases, 127 historical perspectives, 26, 27 informed consent, 7, 14, 188-189, 192, 196, 198-199, 212, 229 natural remedies, 28, 233 poor persons, 40, 41-42 reporting on, 251, 255-256, 258, 260 reproductive and fertility problems, 236 rural areas, 43, 60, 115 SEER, 46 see also Chemotherapy; Clinical trials; Health insurance U Urban areas, 39, 74, 120, 171, 218 African Americans, 49, 119, 129 American Indians, 64 brownfields, 144 clinical trials, recruitment and retention, 7, 189, 197-198, 207, 229 SEER, 47, 49, 107, 108 V Veterans, see Department of Veterans Affairs Vietnamese, 30, 123 W What Are Clinical Trials All About?, 192 Women, 19, 20, 25, 54, 56, 75, 109, 123, 204, 252, 253, 300-313 African Americans, 1, 14, 28, 30, 69, 112, 115, 116, 123, 126, 128-129, 163-164, 165, 201, 204, 205, 206, 210, 215, 250, 300-313 American Indians/Alaska Natives, 62-63, 64, 67, 75, 204, 205, 300-313 Asians/Pacific Islanders, 1, 28, 75-76, 116, 129, 164 clinical trials, 19, 112, 177, 178, 190, 191, 199, 200, 203, 204-205, 210 Hispanics, 75, 89, 210, 300-313 Office of Research on Women's Health, 19, 193, 194 reproductive and fertility problems, 236 survivorship, 231, 234, 236 see also Breast cancer; Cervical and uterine cancer; Gender differences; Ovarian cancer Women's Health Initiative, 26, 148-149 Women's Health Trial: Feasibility Study in Minority Populations, 112 Y Yarborough Commission, 17