Biospecimen repositories: are blood donors willing to participate?

BACKGROUND: Sponsored by the National Heart, Lung, and Blood Institute, the Retrovirus Epidemiology Donor Studies (REDS-I/-II) have conducted epidemiologic, laboratory, and survey research on volunteer blood donors. Some studies request additional permission to store biospecimens for future studies. The representativeness and applicability of studies performed using repositories may be reduced by low participation rates. STUDY DESIGN AND METHODS: Demographics from subjects consenting to participate in the 2007 REDS-II Leukocyte Antibodies Prevalence Study (LAPS) repository were compared to "study-only" subjects. Data from the 1998 REDS-I survey of donor opinion regarding storage and use of biospecimens were also explored. RESULTS: Overall, 91% of LAPS subjects agreed to participate in the repository. Odds of repository participation were lower among African American and Hispanic donors, 35- to 44-year-olds, donors who had not completed high school, and donors from one geographic location, regardless of other variables. Survey data from 1998 revealed that 97% of respondents approved of long-term storage of biospecimens, although only 87% indicated that they would personally participate. Many respondents would require notification or their permission be obtained before participation. Minority respondents would require permission or notification more often and were less certain they would personally participate in a repository. CONCLUSION: Blood donors are quite willing to participate in biospecimen repositories. Regional differences and lower odds of participation in the minority blood donor population may result in a reduced number of biospecimens available for study and a decreased ability to definitely answer specific research questions in these populations.

The Longitudinal Epidemiologic Assessment of Diabetes Risk (LEADR): Unique 1.4 M patient Electronic Health Record cohort.

BACKGROUND: The Longitudinal Epidemiologic Assessment of Diabetes Risk (LEADR) study uses a novel Electronic Health Record (EHR) data approach as a tool to assess the epidemiology of known and new risk factors for type 2 diabetes mellitus (T2DM) and study how prevention interventions affect progression to and onset of T2DM. We created an electronic cohort of 1.4 million patients having had at least 4 encounters with a healthcare organization for at least 24-months; were aged ≥18 years in 2010; and had no diabetes (i.e., T1DM or T2DM) at cohort entry or in the 12 months following entry. EHR data came from patients at nine healthcare organizations across the U.S. between January 1, 2010-December 31, 2016. RESULTS: Approximately 5.9% of the LEADR cohort (82,922 patients) developed T2DM, providing opportunities to explore longitudinal clinical care, medication use, risk factor trajectories, and diagnoses for these patients, compared with patients similarly matched prior to disease onset. CONCLUSIONS: LEADR represents one of the largest EHR databases to have repurposed EHR data to examine patients' T2DM risk. This paper is first in a series demonstrating this novel approach to studying T2DM. IMPLICATIONS: Chronic conditions that often take years to develop can be studied efficiently using EHR data in a retrospective design. LEVEL OF EVIDENCE: While much is already known about T2DM risk, this EHR's cohort's 160 M data points for 1.4 M people over six years, provides opportunities to investigate new unique risk factors and evaluate research hypotheses where results could modify public health practice for preventing T2DM.

Opinions about donating blood among those who never gave and those who stopped: a focus group assessment.

BACKGROUND: Understanding what prevents people from ever donating blood, or having donated, what influenced them to stop, are both equally important in devising recruitment strategies. Enlisting new donors and encouraging previous donors to return are vital to increasing collections. STUDY DESIGN AND METHODS: Six racially homogeneous focus groups of never donors and lapsed donors were conducted. Both sexes and a range of age groups were represented. The importance of blood donation as a volunteer activity, deterrents, motivations, awareness of need, and effective recruitment messages were topics discussed. RESULTS: Never donors do not see blood donation as an important volunteer activity on par with others like volunteering at hospitals, schools, and support groups. Fear and inconvenience were major barriers to donating. Better education campaigns to allay fears about donating and workplace drives were considered important motivators. Participants were unaware of the need for blood. Media messages that combine safety of the process along with who it benefits were considered most effective. Messages that target the specific needs of minority communities were considered good motivators for their recruitment. CONCLUSION: Blood collection agencies should increase awareness that blood donation is a worthwhile and important volunteer activity. Another strategy would be to capitalize on the existing perception that donating blood is like donating money or used clothing, by focusing on the concept of giving something tangible. Along with providing convenient opportunities to donate, blood centers need to effectively convey the need for blood and allay fears about the donation process to increase the current donor pool.