BackgroundHistorically, groups that are most susceptible to health and healthcare disparities have been underrepresented in medical research. It is imperative to explore approaches that can facilitate the recruitment of underrepresented individuals into research studies.MethodsTwo approaches, hospital and community‐based recruitment (CBR), were developed and implemented over 36 months to study the genetics of hereditary breast cancer and associated cancers in Alabama, a medically underserved state with double the national percentage of self‐identifying African Americans, establishing the Alabama Hereditary Cancer Cohort.ResultsOverall, 242 individuals enrolled. This included 84 cancer probands through hospital recruitment, as well as 76 probands and 82 family members through CBR. Eighty‐one percent of the study participants’ counties of residence are completely medically underserved. Furthermore, African Americans represent 26% of the hospital probands compared to 49% and 70% of the probands and family members who, respectively, enrolled through CBR.ConclusionAlthough both recruitment mechanisms were instrumental, the unique trust building, educational, and traveling components of CBR facilitated the enrollment of African Americans resulting in large families for genetic analyses. The ultimate goal is to gain insight from these rudimentary efforts in order to expand recruitment and accrue a unique resource for cancer genetics research.
Objectives: Suggested therapeutic options for Multisystem Inflammatory Syndrome in Children (MIS-C) include intravenous immunoglobulins (IVIG) and steroids. Prior studies have shown the benefit of combination therapy with both agents on fever control or the resolution of organ dysfunction. The primary objective of this study was to analyze the impact of IVIG and steroids on hospital and ICU length of stay (LOS) in patients with MIS-C associated with Coronavirus Disease 2019 (COVID-19).
Over 60% of the Alabama population is medically underserved, including the entire population of many Alabama counties. These counties are generally rural and have transportation barriers, thus a lack of access to healthcare results in poor cancer outcomes. These healthcare gaps, in addition to lower education levels and mistrust towards researcher/healthcare providers, highlight the challenges but also the need to make a difference in this underserved and understudied population. In general, recruitment for human genetic research studies presents major challenges, and, despite federal mandates to include women and minorities in federally funded research, African Americans (AAs) remain underrepresented in cancer genetic research. Recruitment of participants requires extensive efforts and strategic planning in order to overcome the difficulties, such as distrust towards medical research and logistical challenges of recruiting under-served and under-represented individuals. These considerations led to the establishment of two IRB-approved protocols, hospital recruitment (#14-232) and community-based recruitment (CBR; #15-111) to recruit cancer individuals/families from Alabama and identify genetic risk factors. Hospital recruitment was established through a partnership with East Alabama Medical Center (EAMC), and CBR targets medically underserved individuals through a mechanism aimed to educate and build trust in the community. Through connections fostered by community-partners, CBR team members travel to rural communities all over Alabama to be introduced to, educate, and recruit patients/survivors and their family members. All CBR team members are phlebotomy trained. Recruitment particularly focuses on cancer associated with Hereditary Breast and Ovarian Cancer (HBOC) Syndrome since there are two disparities within the AA population that may be genetically linked. Firstly, AA women are generally diagnosed with a more aggressive and less treatable breast cancer (BC) sub-type and have a higher incidence rate of BC under the age of 40 compared to Caucasians. Secondly, AA males are generally diagnosed with prostate cancer (PC) at a younger age and with larger tumors compared to Caucasians. Considering that (1) an early age of onset is a hallmark of hereditary cancer, (2) hereditary BC is associated with an increased risk of ovarian cancer (OvC) and PC, and (3) the Black Women's Health Study has demonstrated there is a strong familial component of AA BC, inherited and potentially overlapping genetic risk factors may explain these disparities. Thus, the study enrollment criteria include individuals (1) diagnosed with BC, OvC, or PC under the age of 45 and/or (2) diagnosed with BC, OvC, or PC with have a cancer family history. Ultimately, in an effort to recruit informative families for genetic study, both cancer-affected and unaffected family members of study participants can join the study. To date, 133 DNA samples from 74 cancer families are stored in the Merner DNA Bank; 33 and 41 probands have been recruited through EAMC and CBR, respectively. CBR has been the most effective mechanism of AA BC recruitment (20/36) compared to hospital recruitment (5/32). Probands are screened for known and candidate susceptibility genes using the BRAP (BReast And Prostate) gene-screening panel. This aims to provide insight towards the true contribution of mutations in known susceptibility genes, and identify non-mutation individuals/families for novel HBOC susceptibility gene discovery efforts. Additionally, this study offers each participant the option to receive her/his confidential research-based gene screening results and aims to translate those results to the clinic by providing free UAB telegenetic counseling to underserved individuals through the use of telemedicine carts at equipped Alabama County Health Departments. Citation Format: Nancy Merner, Madison Chandler, Amber Davis, Ebony Jackson, Erin Bilgili, Cameron Turner, Kasey Shepp, Stephanie Spina, Brandon Johnson. Cancer genetics research in Alabama: Recruitment mechanisms to reach the underserved. [abstract]. In: Proceedings of the Ninth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2016 Sep 25-28; Fort Lauderdale, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2017;26(2 Suppl):Abstract nr A47.
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