Help with our Premenstrual Dysphoric Disorder research

Premenstrual Dysphoric Disorder (PMDD) is a mood disorder with symptoms that present during the luteal phase of the menstrual cycle (this occurs about a week before the onset of menstrual bleeding/’the period’) and stop at the onset of the period.

Despite PMDD being directly connected to the menstrual cycle, it is not a hormone imbalance but a negative reaction in the brain to the natural rise and fall of estrogen and progesterone that occur during the cycle. Symptoms of PMDD include: 

• Mood/emotional changes eg mood swings, feeling suddenly sad or tearful, or increased sensitivity to rejection
• Irritability, anger, or increased interpersonal conflict 
• Anxiety, tension, or feelings of being keyed up or on edge 
• Decreased interest in usual activities eg work, school, friends, hobbies
• Difficulty concentrating, focusing or thinking 
• And other symptoms, including physical symptoms eg breast tenderness, joint/muscle pain, bloating

Severe Premenstrual Syndrome (PMS) is similar to PMDD, with individuals experiencing a collection of emotional/and or physical symptoms during the luteal/premenstrual phase, which stop at the onset of the period. However, PMS is more common, and individuals experience fewer and usually less severe symptoms than those with PMDD.  

This study is led by the National Centre for Mental Health (NCMH). NCMH is a Welsh Government funded Research Centre, led by Cardiff, Swansea and Bangor Universities. It is being funded by Health and Care Research Wales, Welsh Government. The Director of the National Centre for Mental Health is Professor Ian Jones.

The PreDDICT project has also received additional funding from the European Research Council, awarded to Dr Arianna di Florio. 

You will have the opportunity to join the study once you have read through and understood the information.   

We hope that learning more about Premenstrual Dysphoric Disorder and severe Premenstrual Syndrome will lead to new ways of diagnosing, treating or even preventing the illness.  However, these remain long-term aims and you will not benefit directly from taking part in this study.  

Only the study team will have access to your data and only they will contact you directly.

All information collected during the course of the research will be kept strictly confidential. There are strict laws that safeguard your privacy at every stage. In accordance with the General Data Protection Regulation (GDPR) (2018) and the Data Protection Act (2018), your personal information will be kept confidential by assigning a unique study code to your data. Your name and identifying information will not be passed on to anyone.

Cardiff University is the Data Controller and is committed to respecting and protecting your personal data in accordance with your expectations and Data Protection legislation. Further information about Data Protection, including:

• your rights
• the legal basis under which Cardiff University processes your personal data for research
• Cardiff University’s Data Protection Policy
• how to contact the Cardiff University Data Protection Officer
• how to contact the Information Commissioner’s Office

may be found on the Cardiff University website.

We will keep your personal data for 15 years following the end of the research project.

After 15 years, the research team will anonymise all the personal data it has collected from, or about, you in connection with this research project. Anonymised information may be published in support of the research project and/or retained indefinitely, where it is likely to have continuing value for research purposes.

When you agree to take part and sign up, you will be asked to provide contact details and some other information about yourself such as your age and ethnic group. 

You will also be asked to answer some questions about your experiences of Premenstrual Dysphoric Disorder/severe Premenstrual Syndrome and the care and support you have received.  

First, you need to join the study. This involves reading this information and then consenting on the first page of the study.  This should take about five minutes. Take as much time as you need to decide whether you wish to take part.  

Once you have joined, you will be asked some questions. This should take about 20 – 25 minutes to finish. We know that we get the best data if you are able to complete these questions in one go, but if for some reason this isn’t possible then you can come back to the website later because you can save your answers once you have finished a set of questions.  

You do not have to take part in this study. If you do decide to take part you are still free to withdraw your consent to participate in the research project at any time, without giving a reason, even after signing the consent form.

It will not be possible to withdraw any anonymised data that has already been published or in some cases, where identifiers are irreversibly removed during the course of a research project, from the point at which it has been anonymised.

This is a long term study that will allow us to learn about Premenstrual Dysphoric Disorder/severe Premenstrual Syndrome. The information you provide will be stored for use on a long term basis (at least 15 years). 

You will not have any claim to any future commercial use of results from the study in which your data has been used. To make the best use of resources we will share data (anonymised to exclude any personal details) with different groups of researchers from the NHS, universities and commercial companies, both within the UK and abroad. However, we would stress that those organizations will never obtain access to personal/ identifying information (for example, your name, address, date of birth).  

Ethical approval has been obtained from the National Research Ethics Service and NHS (Research and Development) permission has also been obtained.

If you have further questions about the study please contact the study team:

National Centre for Mental Health
Cardiff University
Hadyn Ellis Building,
Maindy Road,
Cathays,
Cardiff
CF24 4HQ

Phone: 029 20688401

Fax: 029 20687100

Email: info@ncmh.info

Yes, you can contact Dr Vanessa Davies on 029 2068 8340 or at daviesvj@cardiff.ac.uk. You can also write to her at:

Dr Vanessa Davies
Institute Manager
Neuroscience and Mental Health Research Institute
3rd Floor, Hadyn Ellis Building
Maindy Road
Cardiff
CF24 4HQ