I often hear from people who would like to take part in research but don’t know where to start. This post aims to address that issue - I hope it helps!
Let's break it down into small steps...
Why do people take part in OCD research?
Choosing whether to take part in research is a very individual choice. There are a wide range of reasons why people take part but some of the main ones are:
The want to help make advances in the medical field
They hope it will stop others having to go through the challenges they did
If the research is testing new treatment, they hope they will benefit from the treatment
There may be financial gain
Have I taken part in research?
I’ve been taking part in research since I entered OCD recovery. I’ve been interviewed about perinatal OCD by Oxford University and the University of Bath. I’ve helped with research on new apps and interventions for OCD. I’ve been interviewed about the impact of city living on mental health and I’ve had my saliva analysed for stress indicators. Taking part in this research was my own choice, no one put any pressure on me to do it and I did it because I wanted to help further our knowledge of OCD. I’d lived with the downside of OCD for years, I wanted to use those experiences to help others if I could!
What good practice should you be seeing?
It’s important that the university or company carrying out the research is transparent. If you are thinking about taking part in research, here are some questions you can ask yourself.
Are full details about the study fully available to you?
Are you given someone you can contact to find out more information?
Is the study affiliated with a reputable company or organisation?
Can you easily find out about the ethical considerations and governing bodies?
Are you spoken to thoroughly about safeguarding and well-being?
Are you given the option to pull out at any time?
Are the studies supported by other charities and medical professionals?
Are they able to provide full information about how your data will be treated?
Where can you find out about OCD research?
Universities and organisations often share their research on social media but that can be easy to miss. One of the best ways is to find out via the charities websites. That way you know the charity has done the due diligence and all of the paperwork is in place!
Here are links to some of the best places to find out about research:
Orchard OCD is a charity that is focussed on developing treatments for OCD.
They have recently started a registry which matches people with OCD with specific studies. There is no pressure to say yes to any studies you have been paired with. Some of OCD’s most qualified and experienced researchers are involved in the development of this registry. I sit on the steering committee as an expert by experience. You can find out more about the registry here!
The OCD Action research page.
The International OCD Foundation - If you are based in the U.S. the IOCDF is known for funding and developing a wide range of treatment and research. You can check it out here!
Biohaven are currently recruiting participants for a clinical trial studying an investigational drug that targets glutamate, a chemical in the brain that is believed to contribute to OCD. They are doing trials in the US and the UK. You can find out more here for the US site and here for the UK site. Biohaven also have an advocacy wing of their research featuring a few familiar US OCD advocates. Check out their award winning 'What If' campaign?
Over the years I’ve worked with Dr Josie Millar from the University of Bath on a number of OCD research projects. Each time I have felt extremely well looked after. If you're interested in taking part in research, please keep an eye out for her future projects.
This is also the case for Professor Paul Salkovskis who often shares his latest research opportunities here.
A new study on Perinatal OCD has just started at King's College. The details are below.
It’s important to know that…
You can ask as many questions as you need to to find out if a particular study is for you or not.
Even after you’ve agreed to take part in research, you can withdraw at any time.
And I’m going to end on this one. It’s the most important one.
You do not need to take part in research unless you want to. Don’t guilt trip yourself, don’t compare yourself to others, if you want to take part that's great, check out the links above, if not, that's 100% okay too. <3
Okay, so there we have it! I hope it helps!
Until the next time,
loads of love,
Catherine xx
Further Reading
Experiencing urges as part of your OCD? Learn all about that here!
Want to learn how to show yourself more compassion? This will help!
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