Remote blood collection among cancer patients and age- and sex-matched controls for biomarker and genetic analyses using the PROFILES registry

Studies on patient-reported outcomes (PROs) among cancer survivors are increasing but are most often limited to PRO and clinical data. To better understand the underlying biological mechanisms that mediate a decline in health after cancer, several PROFILES-registry studies were enriched with biological data. This paper summarizes lessons learned from collecting blood samples to obtain biomarker data among survivors and controls in large-scale ambulatory cohort studies. These lessons address financial challenges, ethical issues, insurance, legal matters, standardization of assessment, recruitment, communication with participants, lab facilities and protocols, transportation, the need for a biobank, and the value of a normative population. We also describe our experiences with collecting remote blood samples in these studies among cancer patient populations and a study in our normative population to illustrate these issues further.