Recording of virtual meeting – Adherence and retention in ALS clinical trials

On March 22, 2023, TRICALS organised its first virtual meeting: ‘Adherence and retention in ALS clinical trials – How to move beyond the state-of-the-art’. The meeting brought together leading experts in the field of ALS research, along with study staff, representatives from pharmaceutical companies and contract research organizations. Watch the recordig of the meeting by clicking on the button below.

Clinical trials are critical for the development of new treatments for ALS, but patient retention and adherence can be major challenges in these trials. Poor adherence can lead to inaccurate or incomplete data, which can compromise the validity of results. Retention is important to ensure that a study has enough participants to produce meaningful results and that results are not biased by the loss of participants over time. In ALS clinical trials, adherence and retention can be challenging due to the progressive nature of the disease, which can make it difficult for patients to travel to study sites or complete study activities.

The virtual meeting focused on strategies to improve adherence and retention in ALS clinical trials, including:

• Communication: Clear communication with study participants about the importance of adhering to the study protocol and the potential benefits of participation can help to motivate patients to remain engaged in the study. Clarify common misconceptions about clinical trials and trial design.
• Patient-centered approach: A patient-centered approach that takes into account the needs and preferences of patients can help to improve adherence and retention by making the study requirements more manageable and acceptable for patients.
• Patient support: Providing patients with access to support programs in the study, such as transportation and accommodation, be transparent as healthcare provider and considering the energy levels of patients can help to address the challenges of participating in a clinical trial.

Key speakers were Prof. Leonard van den Berg (Professor of Neurology UMCU and chair of TRICALS), Ruben van Eijk, PhD (Medical statistician UMCU), Tommy Bunte, MSc (UMCU), Juliette Foucher, MSc (Karolinska Institute) and dr. Javier Mascías Cadavid (TRICALS member, Neurologist Hospital Universitario La Paz – Carlos III).

Overall, the meeting was a milestone in the field of ALS research. By bringing together experts from academia and industry the meeting helped to foster collaboration.