As a consequence of COVID-19, many people are facing social distancing, uncertainty and a number of pressures including anxiety, depression as well as financial constraints. That is not something new for people living with rare and orphan (R&O) diseases. This is how they live every day.
Patients suffering from rare diseases are more vulnerable than ever before. They were already facing limitations to travel to see their doctor but now multiple clinical trials are being withdrawn, postponed, or are required to re-start because of patient visit restrictions and a breakdown in execution of clinical protocols and data capture. Furthermore, a recent industry survey revealed that 95% of patients with R&O conditions felt increased anxiety that companies will reprioritize funds and resources ‘post pandemic’ meaning that treatments are further away than ever.
This year at the European Conference Rare Diseases (ECRD) the focus was on how to accelerate the development of treatment to patients through integrated clinical, regulatory, Real World Evidence (RWE) strategies for early market access and use.
At ECRD we had the opportunity to present our Syneos One ADAPT R&O model that addresses all these challenges. Our ADAPT approach was well received by physicians, regulators and patient representatives and will be reflected in new initiatives to allow for an enhanced R&O strategy, #ecrd2030.