Only 3% of Northern Ireland women with ovarian cancer are recruited to potentially life-extending trials, the lowest for any region in the UK, a new study has revealed.
Each year about 180 women in Northern Ireland are diagnosed with the disease. Yet in 2013-14, only six women here were recruited to an ovarian cancer trial, making it the worst area in the UK to access trials which offer drugs not otherwise available.
Around 100 lose their lives to the disease every year here, with many unable to access cancer drugs available elsewhere in the UK.
The daughter of Belfast cancer campaigner Una Crudden, who died from ovarian cancer last year, branded the figure as "unacceptable".
The latest statistics come as it emerged Angelina Jolie underwent surgery to have her ovaries and fallopian tubes removed as a preventative measure against cancer. The actress said she had the surgery as she carries a gene called BRCA1 which gave her a 50% risk of developing ovarian cancer. Two years ago she had a double mastectomy after she was diagnosed a carrier of the potentially deadly mutant gene BRCA1.
Speaking on what would have been her mother's 61st birthday, Lisa McGarry said: "Northern Ireland is pioneering in developing ovarian cancer trials which is to be commended, but women with ovarian cancer in Northern Ireland are not benefiting at all. Women aren't getting access to the new drugs, which defeats the purpose of the pioneering research."
Despite the widespread disparity across regions, participation in research trials for ovarian cancer is at near record levels. Currently 19% of women with ovarian cancer are involved in a clinical trial, compared with just 11% in the previous year.
But Lisa added: "It is unacceptable Northern Ireland is the worst region in the UK for women to access clinical trials for ovarian cancer, and my mother was very vocal at highlighting this massive disparity within Northern Ireland."
Annwen Jones, chief executive of Target Ovarian Cancer which carried out the study, said: "It's worrying to see that there is still such a regional variation when it comes to ovarian cancer research trials. Every woman with ovarian cancer should get access to clinical trials, no matter where they live."
Belfast City Council will mark ovarian cancer awareness month tonight by lighting City Hall in teal, the colour associated with the awareness campaign.
Symptoms of ovarian cancer are frequent (they usually happen more than 12 times a month) and persistent, and include: