Below is a list of some of the commonly asked questions from patients considering taking part in a study. Hopefully this will help you decide to take part in future studies. If this does not answer your questions, please call us on 01382 632573
Q. What is the purpose of the study?
Heart Failure is common in Europe and is increasing as our population ages. We aim to provide personalised medication for heart failure patients based on their genetic profile. There is increasing evidence that genes can play an important role in inter-individual differences in response to drug therapy. Understanding an individual's personal genetic profile may help us in the future to make heart failure medicine more personalized to ensure that every individual benefits maximally from their medicine while reducing the chance of unwanted side effects.
Q. How many visits will I need to make?
This is a single visit research programme
Q. What time of day will the clinic appointment be?
Most visits will take place from 9am till 4pm. But our research staff aim to be flexible in order to accommodate varying lifestyles and patient priorities.
Q. Where will the visit take place?
Visits will be carried out at the Institute of Cardiovascular Research, Ninewells Hospital, Dundee.
Q. What happens during the study visit?
- Signing informed consent
- Completing two questionnaires
- Giving information about your medical, clinical & family history
- Taking blood and urine samples
- Height-weight measurements, waist- hip measurements & Blood pressure
- Brief physical examination
- An ECG
Q. Will this upset my current medications or health condition?
No. We are not giving any pills or drugs for you to take part in this study.
Q. Will I receive any payment for taking part in this study?
Unfortunately we cannot pay patients for taking part but you will be able to claim reasonable travel expenses.
Q. What happens if I wish to withdraw from the study?
You can withdraw from the study at any time without having to give a reason and this will not affect your ongoing health care in any way.
Q. What happens at the end of a study?
When the study is completed you will return to your normal clinic for your routine visits.
Q. Can I bring someone with me to a visit?
Yes, you can bring a relative or friend along with you to your visit.
Q. How long will visits last?
The visits will last about 1 hour.
Q. What type of research is this?
This is an observational study. Participants will be asked to answer questions about their family histories and give blood samples, but they will not receive treatment for their diseases.
Q. Will taking part in a research study affect the care I receive from my doctors?
No. Your GP will be informed once you have taken part in this study
Q. What is ‘Informed Consent’?
Except in exceptional circumstances you cannot be entered into a study without signing a form saying that you have given your informed consent. If you sign this form, you confirm that you believe you have been given all the important facts about the study, you understand them and that you have decided to take part of your own free will. An informed consent is not a contract and you may withdraw at any time.
Q. Will my details and other personal information be confidential?
If you agree to take part in a study then all your study records, and any information collected about you, will be kept confidential.
Q. Will I find out the results?
It may be some time before the results become available. This is a 3 year long observational study with the participation of 2500 people with heart failure. At the end of this study, we will make the results available to everyone who took part.
Q. What will happen to my samples or information about me during and after the study? Will others be able to look at it or use it for further research?
If you agree to join the study, some people will need to be told that you are taking part. These people are
- Your GP, who is responsible for your healthcare on a day-to-day basis
- The doctor and research team looking after you
Investigators cannot tell anyone else that you are taking part unless you give your permission. During the study, all of the information collected about you will be kept confidential, as with any other records. When investigators publish the results of the study, they are not allowed to include any information that would identify people- Your name will not be used in any reports or publications. Any samples or information taken will be bar-coded and anonymised.
The study protocol will define what is to be done with your samples and information. If samples and/or information are to be used further, then this will be either
- Included in the original protocol
- Be part of the informed consent you will sign
- Be written up in a specific informed consent which you will also be asked to sign.
You will always have an option to exclude yourself from using your samples and/or information for other studies.
Q. Is there someone I can ask if I have questions or problems that arise while I am the study?
If you have any questions or problems you can always ask the trial investigator or any member of research team first. They will be able to help you.