CITI Developer Meeting Human Subjects Research October 23

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CITI Developer Meeting Human Subjects Research October 23, 2009

CITI Developer Meeting Human Subjects Research October 23, 2009

Meeting CD

Meeting CD

CITI International Programs

CITI International Programs

CITI Worldwide Footprint 9 -1 -09 World wide n = 1324 International n =

CITI Worldwide Footprint 9 -1 -09 World wide n = 1324 International n = 65 sites / 38 countries

CITI International • • • >1324 sites around the world >65 international sites in

CITI International • • • >1324 sites around the world >65 international sites in 38 countries. (5%) CITI Collaborating Centers – Develop sustainable CITI Programs for the international research community. • • Latin America Taiwan Japan Korea India Middle East Canada

Multilanguage Course Site • Multi-language Course Site. 11 -2007 • Updated in 2008 and

Multilanguage Course Site • Multi-language Course Site. 11 -2007 • Updated in 2008 and 2009 to accommodate UTF-8 character sets. • Languages. – English – Spanish (NAID, FIC) – Portuguese (NAID, FIC) – Chinese – Japanese – French (NIAID) – Thai (US Army) – Russian (US Army) – Korean – Kartuli (FIC) – Arabic

CITI International Centers • CITI International Collaborating Centers – – – CITI - India

CITI International Centers • CITI International Collaborating Centers – – – CITI - India Anil Sharma, MD CITI - Korea - B. I. Chou Ph. D. Caribbean/Latin America/South America – Sergio Litewka , MD CITI -Taiwan – Benjamin Kuo, MD /Paul Braunschweiger Ph. D. CITI - Japan – Iekuni Ichikawa, MD CITI - Canada – Karen Arts, MS - Ontario Institute of Cancer Research.

CITI India Anil Sharma MD

CITI India Anil Sharma MD

Initial Workshop • November 24, 25, 26 • SRU- Sri Ramachandra University – –

Initial Workshop • November 24, 25, 26 • SRU- Sri Ramachandra University – – Prominent University in Chennai More than 43, 000 students Has Medical, Pharmacy, Nursing and Dental Schools. Affiliated with Harvard Medical International

INDO - US WORKSHOP

INDO - US WORKSHOP "PROMOTING RESEARCH ETHICS EDUCATION IN INDIA" Organized by Sri Ramachandra University, India and CITI Program, University of Miami, USA November 24 th to 26 th 2009 http: //srmc. edu/indo_us_2010/index. htm Organizing Committee • • Paul Braunschweiger Mansoor Ahmed Ram Agarwal Anil Sharma S. P. Thyagarajan Melody Lin Chiu Lin Jerry Castellano

3 Day seminar • Researchers from Academia and industry are invited to discuss content

3 Day seminar • Researchers from Academia and industry are invited to discuss content development. • Over 100 researchers attending 3 day meeting. • Guest speakers include ICMR officials.

OHRP grant • We thank OHRP for their generous support to help start CITI

OHRP grant • We thank OHRP for their generous support to help start CITI India.

CITI International Centers • Update on Collaborations since October 2008– Paul Braunschweiger • CITI

CITI International Centers • Update on Collaborations since October 2008– Paul Braunschweiger • CITI International Cooperative Centers – – – CITI - India Anil Sharma, MD CITI - Korea - B. I. Chou Ph. D. Caribbean/Latin America/South America – Sergio Litewka , MD CITI -Taiwan – Benjamin Kuo, MD /Paul Braunschweiger Ph. D. CITI - Japan – Iekuni Ichikawa, MD CITI - Canada – Karen Arts, MS - Ontario Institute of Cancer Research.

CITI-Korea B. I. Chou Ph. D.

CITI-Korea B. I. Chou Ph. D.

Caribbean/Latin America/South America Sergio Litewka , MD

Caribbean/Latin America/South America Sergio Litewka , MD

CITI - Taiwan Benjamin Kuo

CITI - Taiwan Benjamin Kuo

HSP progress in Taiwan Benjamin I. Kuo, MD, Dr. PH CIP Secretariat, Joint Institutional

HSP progress in Taiwan Benjamin I. Kuo, MD, Dr. PH CIP Secretariat, Joint Institutional Review Board

Chinese version of CITI

Chinese version of CITI

Statistics of Taiwan CITI users updated Sep. 3 2009

Statistics of Taiwan CITI users updated Sep. 3 2009

Future plan • Enhancement of CITI Chinese version to be more friendly for nonscientific

Future plan • Enhancement of CITI Chinese version to be more friendly for nonscientific IRB members. • Translation of Responsible Conduct Research (RCR) in CITI. • Set up of Humans Subject Protection Association in Taiwan (Hu. SPAT) – PRIM&R Taiwan version.

CITI - Japan Iekuni Ichikawa, MD

CITI - Japan Iekuni Ichikawa, MD

CITI – Canada Karen Arts, M. S.

CITI – Canada Karen Arts, M. S.

CITI Developer Meeting Human Subjects Research October 23, 2009

CITI Developer Meeting Human Subjects Research October 23, 2009

Physiology Break 10: 00 – 10: 30

Physiology Break 10: 00 – 10: 30

Course Updates • • • HSR Bio. Safety International public access Lab Animal RCR

Course Updates • • • HSR Bio. Safety International public access Lab Animal RCR Course.

CITI Bio-safety & Bio-security Course

CITI Bio-safety & Bio-security Course

Bio-Safety and Bio-Security Ben Fontes, Yale University • • Overview Lab acquired infections Risk

Bio-Safety and Bio-Security Ben Fontes, Yale University • • Overview Lab acquired infections Risk Assessment Risk Management Work Practices PPE Engineering Controls Lab Design • • Emergency Procedures BBP NIH r. DNA Guidelines Human gene transfer Bio-security Shipping* Animal Biosafety Select Agents, Bioterrorism

Bio-safety and Bio-Security Course Reviewers • • Eric Cook - Dartmouth U Michael Spath

Bio-safety and Bio-Security Course Reviewers • • Eric Cook - Dartmouth U Michael Spath - CUNY Andy Cockburn - U. West Virginia Marcia Finucane - U. Kentucky Norma Epley - ECU Jairo Betancourt - U of Miami Paul Braunschweiger - U. Miami Reviews are due back to the office by 10 -1 -09. Course - ready for the PRIM&R meeting.

Bio-Safety and Bio-Security Ben Fontes, Yale University • • Overview Lab acquired infections Risk

Bio-Safety and Bio-Security Ben Fontes, Yale University • • Overview Lab acquired infections Risk Assessment Risk Management Work Practices PPE Engineering Controls Laboratory Design • • Emergency Procedures BBP NIH r. DNA Guidelines Human gene transfer Bio-security Shipping* Animal Biosafety Select Agents, Bioterrorism Reviews are due back to the office by 10 -1 -09. Course - ready for the PRIM&R meeting.

International public access course • www. irbtrainining. org • Training for non-US collaborators on

International public access course • www. irbtrainining. org • Training for non-US collaborators on Us funded projects. • Developed in 2003 -2004 through NIH funded “IRB enhancement grants” – Platform, translation tools and translations. – Materials in English, Spanish, Portuguese, Chinese and French languages • Move training database CITI platform

Lab Animal Welfare Course Mike Mann Ph. D.

Lab Animal Welfare Course Mike Mann Ph. D.

Responsible Conduct of Research Course Paul Braunschweiger Ph. D. Funded by CITI and the

Responsible Conduct of Research Course Paul Braunschweiger Ph. D. Funded by CITI and the ORI / DHHS.

CITI Program Content Library • RCR – – – Biomedical Social and Behavioral Research*

CITI Program Content Library • RCR – – – Biomedical Social and Behavioral Research* Physical Sciences Humanities* Engineering RCR and Science Administrators

New additions to the Program • The RCR with lab animals – Paul Braunschweiger

New additions to the Program • The RCR with lab animals – Paul Braunschweiger Ph. D. • The RCR with human subjects. – Jason Borenstein Ph. D. • RC of scholarly activities in the humanities – Sharon Shriver Ph. D. • RCR in the social and behavioral sciences – Dan Vasgird Ph. D.

Content Editing • Hired a science and technology editor to resolve outstanding issues in

Content Editing • Hired a science and technology editor to resolve outstanding issues in the CITI RCR modules. – Comments regarding typos in the modules – Grammatical errors – Poor quiz question. • • • Deliver is November 14. Reviewed and reconciled by December 1, 2009. Implemented by 1 -1 -10

RCR Course Site Usage

RCR Course Site Usage

RCR Course Completion Reports (C. R. ) awarded Year 2009* 2008 Sites 222 (45%)

RCR Course Completion Reports (C. R. ) awarded Year 2009* 2008 Sites 222 (45%) 136 23, 361 18, 849 C. R. /month 2596 (65%) 1571 C. R. /day 87 (~1200) 52 Total C. R. * 1 -1 -09 to 10 -1 -09, public access and institutional RCR set-ups * 86 new institutional RCR set-ups, 2009 CRs ALL DISCIPLINES RCR CRs / ALL CRs 328, 999 330, 227 6. 8% 5. 6% 10 -1 -09

RCR Course Completion Reports (C. R. ) Awarded via The Public Access Portal. Public

RCR Course Completion Reports (C. R. ) Awarded via The Public Access Portal. Public Access (PA) only 2009* P. A. Registrations 7152 (795/m) 64% P. A. SBR 1417 P. A. biomed 960 PA - Humanities 203 PA - PSE 157 Total PA C. R. 2737 (39%) PA_C. R. /month 304 (12%) * 1 -1 -09 to 10 -1 -09 2008 5835 (486/m) 1273 935 324 94 2626 219 (14%)

RCR Learner feedback RCR Satisfaction Survey

RCR Learner feedback RCR Satisfaction Survey

60% I believe that it is very important that the entire research team (PI,

60% I believe that it is very important that the entire research team (PI, Investigators, staff, students and administrators) and not just the PI, should have a clear understanding of the responsible conduct of research, to insure that the data is collected and distributed with 57% integrity and to the highest ethical standards. 50% 40% n=9309 30% 20% 15% 9% 6% 6% 1% 1% 1% 3 4 3% 0% 1 2 Strongly disagree 5 6 7 8 9 strongly agree

Having completed the CITI Course in the Responsible Conduct of Research and gained a

Having completed the CITI Course in the Responsible Conduct of Research and gained a better understanding of how damaging research misconduct can be to students, to the institutions and to other investigators, I am now more likely to report a clear act of 30%research misconduct to an appropriate person at my organization. 29% 25% % Responders; n=8267 20% 15% 13% 9% 10% 5% 19% 3% 2% 2% 3% 3 4 0% 1 2 Strongly disagree 5 6 7 8 9 strongly agree

Rate the course. RCR 27% 30% L. A. W. 30% 28% 25% % Responders;

Rate the course. RCR 27% 30% L. A. W. 30% 28% 25% % Responders; n=8390 21% 20% 17% 20% 15% 12% 13% 15% 21% 12% 15% 10% 5% 2% 2% 3% 3% 5% 1% 1% 2% 2 3 4% 0% 0% 1 2 3 4 5 6 Poor 7 9 outstanding 28% 30% 8 1 Poor 22% 25% 20% 17% 12% 13% 15% 10% 5% 1% 1% 2% 3% 3 4 0% 1 Poor 2 5 6 7 8 9 outstanding H. S. P 4 5 6 7 8 9 outstanding

Research Survey Mentoring and Mentoring Experiences Participation in Human Subjects Research

Research Survey Mentoring and Mentoring Experiences Participation in Human Subjects Research

New Modules Karen Hansen

New Modules Karen Hansen

Acknowledgements Karen, Paul, Sally and Susan

Acknowledgements Karen, Paul, Sally and Susan

CITI Support Staff Not shown Pablo Velascelo and Ryan Roelans

CITI Support Staff Not shown Pablo Velascelo and Ryan Roelans

The CITI HSR Program Contents Software updates Usage Learner Feedback

The CITI HSR Program Contents Software updates Usage Learner Feedback

CITI Program Content Library • Human subjects – Biomedical • Community Member • ESCRO

CITI Program Content Library • Human subjects – Biomedical • Community Member • ESCRO – Social and Behavioral • Good Clinical Practice – – – English Spanish Portuguese Chinese Thai French, not posted. • HIPS

CITI Program Content Library • RCR – – – Biomedical Social and Behavioral Research*

CITI Program Content Library • RCR – – – Biomedical Social and Behavioral Research* Physical Sciences Humanities* Engineering RCR and Science Administrators • Bio-safety and Bio-security

Software and hardware updates

Software and hardware updates

CITI Software • Software update - 8 -10 -09 – Mike Fallon and the

CITI Software • Software update - 8 -10 -09 – Mike Fallon and the VA software team • Changes to the code and new hardware - 2, 500 concurrent users. (3 x increase computing power. ) • “Look Back” utility is now fully functional – Institutions can give credit for modules completed previously at any time at any institution. • Improved tools for CITI support staff, and more levels of authoring permissions

CITI Software • Software update – UTF-Character set fully implemented • Installed: French, Russian

CITI Software • Software update – UTF-Character set fully implemented • Installed: French, Russian and Thai language templates. – Portal system fully implemented. • 3 institutions are using the portal system, • 8 more are being installed. – Content and registrations and user data from www. IRBTraining. org is being transferred to the www. CITIProgram. org platform.

CITI Software • Software update – CITI Japan- many enhancements – Learner’s menu updated-

CITI Software • Software update – CITI Japan- many enhancements – Learner’s menu updated- less clutter and more relevant info to learner – A new category of module added to gradebooks“optional” – Gradebook simplified- now only one course per gradebook (reduced programming complexity and enhanced site speed)

New CITI Hardware “The need for speed” • Hardware 8 -10 -2009 - ~$33

New CITI Hardware “The need for speed” • Hardware 8 -10 -2009 - ~$33 K – 4 new web servers – 2 new database servers. – 3 Tb back up • Server and Software Upgrades- at least triple computing capacity, many code rewrites to improve efficiency as part of transition to new servers • Improved database backups- even less chance of data loss • Improved training record downloads- many different formats, greater flexibility

Ongoing Upgrades • At discretion of institution, allow credit for other institution’s modules and

Ongoing Upgrades • At discretion of institution, allow credit for other institution’s modules and coursework. • Implement method of giving “credit” to employees for didactic training taken outside the CITI web platform. • Implement an automated method for institutional administrators to assign new coursework to groups or subgroups of learners.

Ongoing Upgrades • Security question implementation for learnerseasier password recovery • Better tools to

Ongoing Upgrades • Security question implementation for learnerseasier password recovery • Better tools to translate course and site pages • More seamless implementation of remote portals • Migration to Cold Fusion to simplify programming and more easily add new features

CITI Program Usage

CITI Program Usage

CITI Program Membership 1400 1324 1250 1200 Member Institutions 1060 1000 806 800 725

CITI Program Membership 1400 1324 1250 1200 Member Institutions 1060 1000 806 800 725 610 600 489 392 400 310 207 200 0 10 3 -00 9 -00 47 0 4 -01 8 -02 8 -03 8 -04 8 -05 9 -06 5 -07 9 -07 4 -08 5 -09 10 -09

Subscriber Breakdown Category University Med. Center Veterans Affairs Health. Care Res, Institutes Small Colleges

Subscriber Breakdown Category University Med. Center Veterans Affairs Health. Care Res, Institutes Small Colleges Government Industry Commercial IRB CRO % 36% 18% 14% 7% 7% 6% 6% 3% 2% 1% Professional Society <1% Non-US 3% 2%

Number of NEW Learners per month completing at least 1 CITI course 60, 000

Number of NEW Learners per month completing at least 1 CITI course 60, 000 9 -2009* 50, 000 40, 000 30, 000 20, 000 10, 000 0 May 2004 Nov May 2005 Nov May 2006 Nov May 2007 Nov May 2008 Nov May 2009 2010

Courses completed per day Number of Learners per day completing at least 1 course

Courses completed per day Number of Learners per day completing at least 1 course 2500 2000 1500 1000 500 0 May Nov May Nov 2004 2005 2006 2007 2008 2009 2010

CITI Business issues • Professional time – 0. 7 FTE • Office Personal –

CITI Business issues • Professional time – 0. 7 FTE • Office Personal – 9. 5 FTE • Consultants – Content – Technical • Program development • Meetings – $230, 000

Feed back from the learners Human Subjects Satisfaction Survey

Feed back from the learners Human Subjects Satisfaction Survey

HSR Survey • • • Navigation Perceived value Utility Intentions Research Component – Participation

HSR Survey • • • Navigation Perceived value Utility Intentions Research Component – Participation in research – Mentoring experiences

Survey responders 22% Student Researcher - Graduate 1% Research Administrator 14% Principal Investigator 1%

Survey responders 22% Student Researcher - Graduate 1% Research Administrator 14% Principal Investigator 1% Data manager 13% Student Researcher - Undergrad 1% Social Worker 12% Research Assistant 1% Site Coordinator 11% Clinical Researcher 1% Site Coordinator 7% Co-Investigator 1% Pharmacist 4% Study Coordinator <1% Statistician 4% Study nurse <1% Lab. Researcher 3% Research Fellow - Post Graduate <1% IRB administrator 2% Interviewer <1% Recruiter 2% Lab. Research Staff n=160, 104

Survey submissions May and September 2009 50% 45% 40% 35% 30% 25% sept. 2009

Survey submissions May and September 2009 50% 45% 40% 35% 30% 25% sept. 2009 20% May-09 15% 10% 5% 0% Biomed - R SBR - R Biomed - Basic SBR - Basic

I believe that ongoing instruction in human subjects protection for ALL members the research

I believe that ongoing instruction in human subjects protection for ALL members the research team is essential for assuring the ethical conduct of research with human research subjects. September 2009 Surveys n=14, 156/51, 000 48% 50% 45% 40% 35% 30% 25% 20% 17% 19% 15% 10% 5% 3% 1% 1% 2% 2 3 4 8% 7% 5 6 0% 1 7 8 9

It was easy to register at the Home Page and enroll in the CITI

It was easy to register at the Home Page and enroll in the CITI course. 60% 50% 40% 30% 19% 20% 13% 10% 8% 4% 2% 3% 3% 2 3 4 6% 0% 1 5 6 7 8 9

Navigation through the CITI Course was easy and intuitive. 50% 45% 40% 35% 30%

Navigation through the CITI Course was easy and intuitive. 50% 45% 40% 35% 30% 25% 20% 15% 10% 5% 0% 47% 22% 15% 3% 1 2% 2% 3% 2 3 4 7% 7% 5 6 7 8 9

Now that I have completed the CITI Course, I feel that the time I

Now that I have completed the CITI Course, I feel that the time I invested was time well spent. 25% 23% 20% 23% 18% 15% 15% 10% 5% 4% 5% 6% 3% 0% 1 2 3 4 5 6 7 8 9

Now that I have completed the course, I am more confident in my ability

Now that I have completed the course, I am more confident in my ability to advise a student or a colleague on an issue of human subjects protection and the ethical conduct of human subjects research. September 2009 , n=13, 716 30% 27% 25% 20% 14% 15% 21% 15% 10% 5% 2% 2% 1 2 3% 4% 3 4 0% 5 6 7 8 9

Now that I have completed this instruction in the protection of human research subjects,

Now that I have completed this instruction in the protection of human research subjects, I intend to take a more active role in assuring that the research at my institution is conducted to the highest ethical standards. I intend to go to more seminars on human subjects issues, pursue professional certification (e. g. , CIP), join an IRB / Research Ethics Committee or join a Data Safety Monitoring Board (DSMB) or take a course in Good Clinical Practice? 25% 23% 22% 20% 15% 14% 10% 5% 5% 1 2 5% 7% 7% 3 4 0% 5 6 7 8 9

How would you rate the

How would you rate the "The Basic Course in the Protection of Human Research Subjects”? 30% 28% 25% 22% 20% 17% 15% 12% 13% 10% 5% 1% 1% 1 2 2% 3% 0% 3 4 5 6 7 8 9

Since I completed the Basic Course, I have taken a more active role in

Since I completed the Basic Course, I have taken a more active role in assuring that the human subjects research at my institution is conducted to the highest ethical standards. I have obtained professional certification (e. g. , CIP), volunteered to be a member of an IRB / Research Ethics Committee or joined a Data Safety Monitoring Board (DSMB). N=5102 Median time from completing the basic course = 2 yrs. 2% 4% 6% 6% Joined a DSMB Obtained professional certification (e. g. , CIP) Completed and advance course such as GCP Joined an IRB or Ethics Committee 56% 13% Gone to more research ethics seminars 44% 68% I have done little more than complete the CITI Basic Course Data from 9 -09

Looking back, I believe that the CITI Basic course, I completed previously, provided me

Looking back, I believe that the CITI Basic course, I completed previously, provided me with the ethical foundation to conduct my human subjects research to the highest ethical standards? Median time from completing the basic course = 2 yrs. 25% 23% 20% 19% 18% 7 8 17% 15% 11% 10% 5% 3% 3% 4% 3 4 2% 0% 1 2 5 6 9

How would you rate the Refresher Course, overall ? n=4798 25% 22% 20% 19%

How would you rate the Refresher Course, overall ? n=4798 25% 22% 20% 19% 20% 16% 15% 11% 10% 5% 2% 2% 1 2 2% 3% 0% 3 4 5 6 7 8 9

I believe that the course I just completed will help me do better science.

I believe that the course I just completed will help me do better science. 25% 22% 20% 17% 15% 15% 10% 5% 4% 5% 5% 3% 0% 1 2 3 4 5 6 7 8 9

Looking back, since completing the Basic Course I am more likely to have the

Looking back, since completing the Basic Course I am more likely to have the confidence to engage in a discussion of human subjects protection or the ethical conduct of human subjects research with students and colleagues. Median time since completion of the basic course is 2 yrs. 25% 20% 22% Refresher Course 19% 21% 20% 12% 14% 15% 10% 5% 2% 2% 3% 27% Basic Course 25% 15% 30% 10% 3% 5% 2% 0% 2% 3% 4% 2 3 4 0% 1 2 3 strongly disagree 4 5 6 7 8 9 strongly agree 1 strongly disagree 5 6 7 8 9 strongly agree

Research Survey Participation in Human Subjects Research

Research Survey Participation in Human Subjects Research

Human subjects research is crucial for finding cures for debilitating diseases, the prevention of

Human subjects research is crucial for finding cures for debilitating diseases, the prevention of deadly pandemics and providing a better understanding of who we are and why we do the things we do. September 2009, n= 14, 956 60% 50% 40% 30% 20% 17% 10% 0% 7% 0% 0% 0% 1 2 3 19% 6% 1% 4 5 6 7 8 9

Have you ever participated in Clinical Research as a subject? 62% NO I have

Have you ever participated in Clinical Research as a subject? 62% NO I have never been a subject in Clinical Research 5% The study involved genetic tests 11% The study was specific for a medical condition I have 12% The study involved the testing of a new drug, biological or medical device (e. g. , vascular stent) 17% The study involved blood tests (not genetics) 55% The study involved questions about my life, behaviors or beliefs

If you were asked previously to be a subject in a Clinical Research Trial

If you were asked previously to be a subject in a Clinical Research Trial September 2009, n=7195 4% I felt that participating in the study posed considerable risk to me 4% I felt the study was not worth my time to be a subject. 5% When asked, I declined to enroll in the trial. 38% I felt that the study was likely to contribute important knowledge to help others 48% I felt that participating in the study posed little risk to me

Would you participate in a Clinical Research Trial as a control subject if the

Would you participate in a Clinical Research Trial as a control subject if the study involved 7% 10% 11% 18% 38% 51% 55% 88% Bone marrow biopsies Under no circumstances would I participate in a clinical research trail as a control subject. Endoscopy or colonoscopy Skin biopsies Genetic testing Non-invasive testing (X-rays or ultrasounds for example) A blood draw Questionnaires about your life, behaviors, or beliefs

If you had a chronic medical condition (e. g. , diabetes, psoriasis, rheumatoid arthritis)

If you had a chronic medical condition (e. g. , diabetes, psoriasis, rheumatoid arthritis) and found out about a research study from your physician, would you participate if the study required: n= 36, 496 responses from 14, 400 people 15% No, I would not participate in such a trial. 19% Entering a randomized study of a conventional surgical approach and a new experimental approach 24% Testing a new vaccine for an infectious disease 37% 40% 53% 86% Entering a randomized study of a new medicine and a placebo. You do not know which one you will get Taking a new investigational medication and multiple blood draws Obtaining genetic information that might reveal information about the disease or its treatment. Completing surveys about the usual treatment you would get from your physician

If you were gravely ill with a life threatening condition (Cancer, stroke, heart failure,

If you were gravely ill with a life threatening condition (Cancer, stroke, heart failure, aneurism) and had exhausted the conventional treatment options, would you participate in a trial that required: 16% No, I would not participate as a subject in a clinical trial. I would want the best current treatment. 44% Entering a randomized study comparing a conventional surgical approach and a new innovative experimental surgical treatment. 47% Entering a randomized study of a new medication and a placebo in which you would not know which you were getting. 60% Obtaining genetic information from you that might reveal information about the disease or its treatment or perhaps the likelihood that others in your family were at increased risk to the same condition. 63% Taking a new investigational medication and multiple blood draws. 68% Completing surveys about the usual treatment you would get from your physician

If my mother had a qualifying illness or condition, I would recommend that she

If my mother had a qualifying illness or condition, I would recommend that she participate in a clinical trial to test the effectiveness a new drug for that condition. 30% 28% 25% 21% 20% 18% 14% 15% 12% 10% 7% 6% 7% 4% 5% 0% 1 2 3 4 5 6 7 8 9

If asked, I would permit my child to participate in a trial that tests

If asked, I would permit my child to participate in a trial that tests the efficacy of a new vaccine for an infectious disease? 40% 37% 35% 31% 30% 25% 20% 17% 15% 13% 17% 13% 10% 7% 5% 0% 1 2 3 4 5 6 7 8 9