Thank you for your post. I haven't been able to find a registry for these sort of trials either but you might find it useful to speak to our team of specialist nurses who might know more about these trials.
You can contact them by posting on our Ask the Nurse board or call our helpline on 0808 800 6000, who will be able to talk you through any questions you have and offer a friendly ear. The opening hours are below:
Late opening Wednesday, 9am-7pm
Does anyone know if there's a patient registry of those with genetic variations linked with breast cancer?
I've recently found out that I have the PALB2 gene linked to breast cancer, and I'm keen to get involved in anything that might help increase knowledge about the development of breast cancer. I'm wondering if there's a registry of people with genes linked to breast cancer, that can be used to provide longitudinal data for researchers into genetic variations and who goes on to develop breast cancer?
I've searched online and looked at the NHS Clinical Trial Gateway, and couldn't find anything. I'm guessing that this is because by their nature, clinical trials are about patients who have developed breast cancer, rather than being a registry of those who may have a predisposition to developing it.
Does anyone know if there is such a registry?