The paper concluded rare disease patients are benefiting from heightened publicity and increased awareness of patient centricity. However, we do not yet feel this patient centric approach has reached the patients themselves. Many orphan disease patients are currently having to decline involvement in trials due to their geographic location.
In our opinion this is something which can so easily be transformed by involving mobile nurses into the trial process. If we are ever to achieve true patient centricity as an industry, we feel that the trial must be as flexible as the patient.
Hence, we feel that the clinical trial experience could be greatly improved for patients, by truly taking the trial to the patient. Further to this, greatly improved flexibility for the patient improves recruitment and retention in the trial. Surely this makes both parties winners? As a result we believe patient centricity is the future of modern clinical trials, particularly within orphan indications.