Here are some frequently asked questions about the Talking Therapies Research Resource.
If the information you are looking for is not on this page, please contact our research team here.
The National Institute of Health Research (NIHR) BioResource is a large biorepository of >100,000 people with and without health problems who are willing to be approached to participate in research studies investigating the link between genes, the environment, health and disease. It is based at centres around England and is funded by the NIHR.
The NIHR Mental Health BioResource is an integral part of the NIHR BioResource which aims to increase participation of people with mental health disorders in medical and psychological research. By joining the TTRR, you will also become a part of the NIHR Mental Health BioResource and will have the opportunity to contribute to future research.
Anyone interested in taking part in the TTRR must read the participant information sheet before consenting to join the study. Please find a downloadable pdf version of the full information sheet here: Information Sheet
The TTRR is only looking to recruit individuals who have been accepted onto a course of psychological therapy through IAPT. If you are interested in taking part in research, we may have other research studies available for you to take part in. Please contact the study team at firstname.lastname@example.org or on 0207 848 1640 (Freephone 0800 019 0718) for more information.
Taking part is entirely voluntary and you can change your mind at any time. You do not need to give a reason. If you would like to withdraw from the project, we would ask you to contact us by emailing email@example.com or calling on 0207 848 1638 or FREEPHONE 0800 634 4504 so we can register your withdrawal on our systems and get any feedback you may have of using the TTRR.
If you request it, we will remove your data from our electronic databases. You can also choose whether you would like your saliva/DNA sample to remain as an anonymised sample in the BioResource or whether you would like it to be destroyed.
Once you have completed your questionnaire, you will be sent a saliva sample kit in the post to the address you provided. This kit will include a Freepost envelope so you can return the sample to the centralised lab we use for TTRR, part of NIHR BioResource.
For more information about producing a saliva sample, please see our saliva instructions leaflet here: TTRR Saliva Instructions Leaflet
To help us understand how genes influence response to psychological treatments, we will isolate and analyse your DNA from the saliva sample that you provide us. Using advanced laboratory techniques, we will then identify the sequence of your genetic code from your DNA. Your survey data will be used to gain a better understanding of your background and your response to treatment which we will link to your genetic data in order to allow us to better understand what genetic risk factors can impact response to psychological treatment. In addition, your survey data will help us to identify future studies that you will be eligible to take part in, across both physical and mental health. All data that you provide us will be stored securely and be kept strictly confidential in accordance with the General Data Protection Regulation.
Keeping your information secure is our highest priority. There are a number of regulations and policies that the Talking Therapies Research Resource (TTRR) complies with to ensure data is protected and that biological samples are stored correctly.
Storage and work on personal data or biological data will always be in accordance with the current ethical guidelines, and the conditions of the consent you have provided. In the event that ethical guidelines are modified, the project will be further evaluated for ethical approval. Personal data such as contact details and linked clinical and phenotypic data being stored at King’s College London will be on secure servers in accordance with the GDPR. This data will also be shared with the NIHR BioResource and will be kept at AIMES, which is an ISO27001-certified data centre, specialising in health care data and medical research, based in Liverpool. Data will not be passed on to any third parties including your doctor, your insurance company or your employer. All data will be used in an anonymised linked format with personal information being accessible only to the research team at King’s College London and NIHR BioResource teams.
Staff at the NIHR BioResource’s sample biorepository will ensure that genetic samples are processed in accordance with strict health and safety guidelines and under the requirements of the Human Tissue Act (HTA) 2004. The NIHR BioResource’s sample biorepository holds an HTA license (License number: 12624). The link between the participant ID and de-identified data will be kept in a secure database accessible only to the lead investigators, the NIHR BioResource team members and senior researchers.
If you would like to read more on how we keep your data secure, click here to go to Terms & Conditions.
Useful links for more information about use of personal and biological data
The General Data Protection Regulation is an EU Regulation which was put in place to ensure the protection of all EU citizens’ data privacy. It also gives people the rights to access any information held about them.
King’s College London Data Protection Policy
This policy outlines King’s College London’s policy for protecting personal information in compliance with the Data Protection Act 1998 (DPA). The university has procedures aiming to ensure that all staff, students, and agents of the university who have access to personal data are aware of their duties and responsibilities under the DPA.
Human Tissue Act 2004
If you provide the TTRR team with a saliva sample, your biological sample is protected by the Human Tissue Act 2004. The Act regulates the removal, storage and use of human tissue and ensures all samples are collected appropriately.
We aim to encourage all types of researchers to do more in mental health – that includes company researchers. The sad truth is that not enough commercial research is done in mental health, such as research to invent new drugs, to design mental health apps and educational aids.
We don’t yet know which companies will apply to do research in the TTRR but each and every company that does will be closely examined by our advisory board and the NIHR BioResource Steering committee, which includes patient/lived experience representation. Only those companies with ethical aims, and whose research is well justified in the judgement of the scientists and medical doctors on the committees, will be approved to use TTRR data, with all data anonymised. None of your personal information will be passed to external researchers, organisations or companies without your consent. If they request to recontact TTRR participants, the TTRR and or the NIHR BioResource will ask you first if you want to be contacted by them on each occasion before we give them your contact details – you can decide.
Combining information from your medical records, questionnaire data, and DNA provides a comprehensive overview for researchers to use in a wide range of investigations. We will only access relevant sections of your medical records that will be helpful to the goals of the TTRR and the research projects approved by the NIHR BioResource Steering Committee. For example, we will request information on the details of your history with anxiety and/or depression and how well you responded to treatment. All information obtained from your medical records will be given a pseudonymised (coded) ID and kept strictly confidential and will be stored separately from your personal information (e.g. name, date of birth).
Accessing medical records is likely to be done centrally through a computer on the Secure NHS Network (N3/HSCN) using your NHS number. Any data that is stored will be linked -anonymised.
We will only access relevant sections of your medical records that will be helpful to our research across mental and physical health.
Many of the additional research studies you will be invited to take part in will be looking at depression and/or anxiety with the goal of better understanding these disorders; however, you may also be contacted to take part in other types of research studies, which may or may not be related to mental health (e.g. auto-immune diseases, cardiovascular conditions etc.) These research studies could be related to other mental or physical health studies indicated from either your questionnaire responses, physical characteristics, or genetic make-up. These studies may be advertised on the website here or you may be contacted directly to ask whether you might be interested in participating. You are under no obligation to take part in additional studies. You may be invited to take part in up to four additional studies per year.
Your genome is your complete set of DNA. Our laboratory team may sequence all or part of your genetic code in order to allow us to improve our understanding of the development and treatment of a range of psychiatric conditions. Your genomic data will be stored securely using a unique ID number, and will be stored separately from any personal identifiers (e.g. name, date of birth).
You will not routinely be given access to your genetic data as we are not collecting your data for clinical diagnosis, but for more general research purposes.
We are only using the genetic data that we extract from your saliva for general research purposes, to improve healthcare and not for individual clinical diagnoses. In the rare instance that we do find something of clinical importance, we will write to your GP recommending further investigation.
You do not normally have to disclose your research participation to your life insurer including any genetic tests that you have completed during your participation.
There are several steps involved in collaboration with the TTRR, depending on whether you are requesting access to data, samples, or would like to recruit TTRR members for your study. All requests need to be approved by the TTRR steering committee.
If you are interested in collaborating, please get in touch with the study team at ttrrAdmin@kcl.ac.uk.
We look forward to hearing from you!
To begin signing up you just need to provide your name, email address and a password. You will be sent a notification email to check we have the best way of contacting you.
After this, the TTRR enrolment process consists of four steps: