Bibi’s Life-Changing Clinical Trial

Royal Berkshire patient shares clinical trial experience for World Clinical Trials Day

Bibi, a renal patient at Royal Berkshire NHS Foundation Trust, has shared her experience of taking part in a clinical trial for focal segmental glomerulosclerosis (FSGS), a rare kidney condition. The Trust published her story to mark World Clinical Trials Day, highlighting the role patients can play in helping researchers gather evidence about potential future treatments.

Bibi said she was diagnosed with FSGS in 2019 and was initially told that there was no treatment available for her condition. She was later invited to consider joining a clinical trial being launched by the Trust. After speaking with the research team, Bibi chose to take part in the blinded study, which involved taking one tablet each morning.

“I trusted them, and I was willing to try anything to save my kidney function,” Bibi said.

Bibi said that, during the study, she noticed improvements in some of her symptoms and that her condition appeared to stabilise at early follow-up appointments. After the blinded phase of the study ended, she chose to continue receiving the medicine being studied through an open-label arrangement. Her account describes her individual experience and does not establish that the treatment is effective or suitable for all people living with FSGS.

For Bibi, the experience also had a personal significance. She said that taking part in research could help other patients access treatments in the future, and that she had since met her first grandchild, with a second grandchild on the way.

“It feels good to have taken part in a clinical trial as I see it will also help other people in the future to have access to treatments they need,” she said.

Maya, a Research Nurse and Research Sister at the Trust, said suitable patients are offered the opportunity to consider clinical research studies and that around 20–30% of those approached choose to participate. She said Bibi was the only eligible patient at the Trust able to complete this particular trial for its full duration.

“Thanks to patients like Bibi, we’re able to gather the evidence we need to make treatments like this more available to patients within the NHS,” Maya said.

Clinical trials help researchers assess potential treatments, their safety and their effectiveness. Anyone considering participation in a study should discuss their individual circumstances with their clinical team. This article reports one patient’s experience and is not medical advice.

Source: Royal Berkshire NHS Foundation Trust