The national OCD charity, run by and for people with lived experience of OCD
Each year we receive dozens of requests for our members to take part in research studies, some of these research projects are NHS approved, others are not. Whilst the vast majority of those only require feedback and time from participants, others involve participants being asked to engage in potentially invasive procedures.
There also remains the problem of continued duplication of research projects that ultimately only impact on a small number of people with OCD.
Therefore, OCD-UK will only ever list those research projects that have received NHS ethical approval (please note this differs from university ethical bodies) and/or which our research panel feels will make a significant difference, without carrying any potential risk to our supporters.
Carrying out due diligence
Whenever we are approached by a researcher we carry out our own due diligence, we have a duty to you our supporters, to protect your rights, dignity, well-being, valuable time and, of course safety. We ask questions of the research project and we endeavour to ensure we know exactly what is involved and what support will be offered to participants.
We also review the language being used within the participant request to ensure plain English is being used to ensure participants are clear what is being asked of them and why. We make sure that participants will not be unnecessarily giving of their time and being asked to open up emotionally without sufficient support and we also review what happens to participants personal data beyond the end of the project.
Following this approach we occasionally will reject promotion of some research projects where we feel there are concerns or recent duplication of studies into a similar area.
Unfortunately because researchers can use social-media to appeal for participants and can even directly contact people with lived experience of OCD, our due diligence process is not always going to prevent people being recruited for research projects where concerns remains.
As a general rule, our advice to our supporters is if you don’t see OCD-UK promoting a research project directly, you need to ask yourself or even contact us directly to ask us ‘why?’ before you choose to get involved.
Research with confidence
OCD-UK believes our policy on being selective in the research participation we promote ensures our members and community can have confidence in participation. For fifteen years OCD-UK has been facilitating collaboration between researchers and volunteers willing to engage in research participation, some of which has led to developments of new services and the way we deal with aspects of managing OCD.
Please visit our research listings page by clicking here for details of active research listings.