APFED partners with many researchers around the globe and with pharmaceutical companies that are working to bring new therapies to the patients who need them. Patient interviews/surveys are a critical step in the process, and it is common for third party services to be used to conduct the interviews to collect unbiased answers. Examples of questions that are typically asked are to help document the patients journey with a disease: How did symptoms present? How was it diagnosed? How is daily life impacted? What are challenges of living with the disease? What does an ideal treatment look like?
Interview opportunities for research that are posted here are reviewed by an Internal Review Board, and a fundamental underpinning of such questionnaires is patient confidentiality. The de-identified information is then shared with the research partner who in turn evaluates their research plan/potential therapy to ensure it meets the needs of the patients. Any personal information collected during the process is confidential and is not shared without express consent. During the interview process, the participants may opt in or out of receiving communications about related clinical trials that are enrolling. Prior to posting opportunities like this, APFED vets them to ensure that the projects are legitimate and sound, are approved by IRB or compliance departments to ensure best practices are met, and are relevant to our patient community.
For more insight into patient involvement in pharmaceutical development, this publication may be helpful: http://www.sciencedirect.com/science/article/pii/S1098301516304326
Hypereosinophilic Syndrome (HES) Patients