Participating in Research
Once you have been contacted by your study coordinator or the CRC for a scheduled appointment, please feel free to browse this area for directions and maps. If you have any questions about your participation or procedures, please contact your study coordinator or study team.
- Research Subject Advocate General Information
- Research Participation Information
- Directions
- Useful Links
Research Subject Advocate General Information
The role of the Research Subject Advocate is to promote clinical research and the safety of research subjects involved in research conducted through the Clinical Research Center.
Who Are the Research Subject Advocates?
Robert Betts, M.D., and Nancy Needler, B.S., C.C.R.C., are the Research Subject Advocates (RSAs) for the University of Rochester Clinical Research Center (CRC). Nancy Needler has an office located on the CRC.
The Research Subject Advocate is a position created to assure the safety of human research subjects participating in clinical trials and other health care research. We strongly support participation in research studies, while making sure that research is done as safely as possible.
Whom do I Contact?
If you have a question about the details of the study you are participating in (such as number of visits, procedures, etc.), contact the study coordinator or investigator.
If you have questions or concerns about your rights as a research subject, contact the RSA at the number provided in this brochure.
What Can the Research Subject Advocates do for You?
One of our roles is to act as an advocate for your rights as a research participant. This includes some of the following:
- Providing information about research in general or helping you obtain information about the particular study in which you may be participating
- Making sure that communication between you and the study investigator or other research personnel goes smoothly
- Serving as an objective witness to the consent process if requested by you
- To discuss and resolve your questions, concerns, or complaints
How Can I Contact a Research Subject Advocate?
One of the Research Subject Advocates is usually available Monday through Friday, from approximately 8:30 a.m. to 4:30 p.m.
Nancy Needler: (585) 275-1020
Robert Betts: (585) 275-1952
You may ask one of the CRC nurses to help you contact one of us.
How Will My Confidentiality be Maintained?
The RSAs will maintain the confidentiality of all communication provided by a research subject. Subjects are encouraged to be honest about their concerns – we are here to protect YOU, the research subject.
General Information about Participating in a Research Study
Participating in a research study is your choice. Make sure you have been given enough information to make your decision. You should have the answers to the following questions:
- Why is this research study being done?
- What tests or procedures are involved? How much of my time will the visits take? How long will I be in the study?
- What types of risks, discomforts, or side effects can I expect?
- What benefits, if any, can I expect?
- What other choices do I have if I do not want to volunteer?
- How will my records be protected?
Remember: You may withdraw from a research study at any time.
Learn more about Research Subject Advocacy
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Research Participant Information
Areas of Research at the CRC
CRC research is conducted in all age ranges from infants to older adults. The research areas include studies of neurological conditions; behavioral, cardiology, endocrinology and metabolism, geriatrics, infectious diseases, nephrology, neurology, nursing, nutrition, obstetrics and gynecology, oncology, pediatrics, psychiatry, pulmonary medicine and surgery.
Your Participation
Before you can participate in a research study at the CRC, you must be given enough information for you to decide whether or not to participate. You should receive answers to the following questions from your research study staff:
- Why is this research study being done?
- Do I qualify for the study?
- What tests or procedures are involved? How much of my time will the visits take? How long will I be in the study?
- What types of risks, discomforts, or side effects can I expect?
- What benefits, if any, can I expect?
- What other choices do I have if I do not want to volunteer?
- How will by medical record information be protected?
If you qualify and decide to participate, you will then sign the Informed Consent Form for your study. If the individual research participant is less than 18 years of age, the parent or legal guardian must sign for the child.
As a research participant, we also ask that you:
- Be aware of the Strong Health Patient’s Bill of Rights: www.stronghealth.com/patientsvisitors/patientrtsresp.cfm
- Participate in your own care
- Ask questions of your research study team
- Make your needs and wishes known to your care providers
The CRC Research Team
Our research study team consists of a number of professional individuals who will work together to give you the care you need:
- Your Primary Care Physician and/or Principal Investigator (the individual who will lead the project) will work with the CRC Program Director, Dr. John E. Gerich, to oversee and direct your research care.
- The CRC Nurse Manager, Patricia Pincus, R.N., M.P.H., C.I.C., C.C.R.C., and the Nurse Leader, Ann Miller, R.N., B.S.N., C.C.R.C., will oversee and direct the nursing care that is provided to you during your stay on the unit and are available to address any nursing concerns.
- Registered Nurses (RNs)/Licensed Practical Nurses (LPNs) will provide nursing care for you during your stay at the CRC.
- The CRC Nutrition Manager, Patricia Stewart, Ph.D., R.D., and the Nutrition Supervisor, Robin Peck, will supervise the standardization and preparation of your meals.
Admission to the CRC
Research participants arriving for an inpatient research visit on the CRC should go directly to the CRC unit of Strong Memorial Hospital at 4-3400.
Directions to CRC Unit
From the parking garage, enter the hospital’s 1st floor main lobby. Walk toward the right through the main lobby and turn right at the end of the hallway. Follow the red ceiling tags to the RED elevators. Take the elevators to the 4th floor (Children’s Hospital unit). As you come out of the elevators, turn RIGHT into the hallway, and then an immediate RIGHT at the first hallway (Unit 4-3400). The hallway will end at the CRC nurses station, where you will check-in. You may also ask for directions at the Information Desk in the Main Lobby.
Food and Nutrition Services
During your stay on the CRC you may be consuming a special diet, sometimes referred to as a “weighed diet.” It is designed to meet your dietary preferences and the restriction of the research project for which you are participating. If you are not required to have a special diet, you can choose your meals from the hospital room service menu. Meal and snack times may vary according to your test schedule, but will generally be provided at regular meal times. If there are any questions or comments concerning your diet, please contact any member of your research study team.
For your family’s convenience, the cafeteria is located on the first floor, and is open daily from 6:30 a.m. to 8:00 p.m.
Phone
You will have access to a telephone for free local calls. Please contact a member of your research study team if you need to make long distance phone calls. Family and friends may call you through Patient Telephone Services at 275-7575.
Television
Cable television is provided free of charge in each room on the Clinical Research Center. You may also want to bring a book or magazine to read.
Clothing
Hospital gowns will be provided during your stay, but ask your study coordinator about bringing your own clothes and sleepwear.
Visiting Hours
Visiting hours in the hospital are from 11:00 am to 8:00 pm. Visiting hours on the CRC are the same as the hospital, but may be relaxed at the discretion of the Nursing Staff. Visiting hours tend to be more lenient on the CRC than on other medical floors.
Going Out on Pass During Your Stay
Research subjects are allowed to leave the CRC on a pass only if approved by the Principal Investigator of the research protocol in which you are participating. However, all inpatients must be back on the unit no later than 11:00 p.m.
Accommodations Available for Family Members
If a child is a research subject on the CRC, a parent or guardian may stay in the room throughout the night with the child. A lounge chair will be provided for the parent or guardian. The parent or guardian will not be allowed to sleep in the bed in the child’s room.
Discharge
When you are ready to leave the hospital, here are some things to think about that may help you:
- Do you know when you are going home?
- Can you drive home? Or do you know who will pick you up from the hospital?
- Do you have all the belongings you brought with you to the hospital, including medications?
- Do you have all the supplies and equipment you will need?
- Do you have your discharge prescriptions (if any)?
- Have you identified friends or family to assist you at home if necessary?
Please feel free to ask your nurse for additional help or if you answered “no” to any of these questions.
You will be informed of your discharge date and time. Your discharge plan will be reviewed with you that day before you leave. The morning of discharge you will receive your prescriptions (if any) and discharge instructions. You will then sign your discharge papers and be discharged according to the research study.
We strive to provide the best customer service on the Clinical Research Center. If you have any concerns or questions at any time, please do not hesitate to ask.
To download this information:
Click here:
Research Participant Information
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Directions
Best Routes to the Medical Center
From the East: NYS Thruway (I-90) to Exit 46; I-390 North to Exit 16 (W. Henrietta Road); cross W. Henrietta to E. River Road; right onto Kendrick Road, Right onto Elmwood Avenue.
From the West: NYS Thruway (I-90) Exit 47; I-490 (east) and I-390 (South) to Exit 16A (E. River Road); right at E. River Road, right at Kendrick Road; Right onto Elmwood Avenue.
From the South: I-390 (North) to Exit 16 (W. Henrietta Road); cross W. Henrietta to East River Road, right onto Kendrick Road, right onto Elmwood Avenue
From the Airport: Turn right upon leaving airport. I-390 (South) to Exit 16A (E. River Road); right at E. River Road; right at Kendrick Road; right onto Elmwood Avenue.
Parking
The Parking Ramp Garage is located by the Main Entrance to the hospital, off Elmwood Ave. Feel free to visit the Parking Office Website for further details and information. This site includes valuable information: parking options, lots and fees ($2.00 - 5.00 depending on time spent at hospital area), violations/ticketing, and special services (e.g., valet parking).
Directions from Parking Ramp Garage Entrance to the Clinical Research Center
- Enter the hospital's 1st floor main lobby, turn RIGHT through lobby.
- Follow RED ceiling tags to red elevators.
- Take elevators to 4th floor, when you exit elevator turn RIGHT down the hallway (you will notice the Children’s Hospital section).
- Take an immediate RIGHT, and walk straight until you arrive at the Clinical Research Center nurses station (Unit 4-3400, (585) 275-2907).
Medical Center and External Map
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Useful Links
Clinical Trials information:
- Strong Health Website to search for clinical trials within the University: www.stronghealth.com/clinical_trials/index.cfm
- NIH/FDA/NLM joint effort to provide clinical trial information to the public: http://clinicaltrials.gov
- CenterWatch (focuses on industry supported trials): http://centerwatch.com
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