Lumanity provides medical writing support for a new study published in the BMJ Open calling for a major shift in the management of hATTR amyloidosis.
This study, and its resultant presentations and publications, were funded by Alnylam Pharmaceuticals. The recommendations were developed by an expert panel of patient advocates and healthcare professionals (HCPs), the Primary Consensus Panel, and endorsed by an International Delphi Survey. They are the first to recognize the value of the patient community in advocating for the needs of people affected by this rare disease and call for a major shift in the current approach to its management.
Within the recommendations, the panel calls for early diagnosis, treatment initiation, and coordinated multidisciplinary care, as well as open dialogue between HCPs and patients to support shared decision-making and consistent monitoring of disease progression. The recommendations also highlight the importance of a tailored family-centered care plan inclusive of supportive care to enable patients to preserve their independence and quality of life.