Effective Recruitment Strategies for a Sickle Cell Patient Registry Across Sites from the Sickle Cell Disease Implementation Consortium (SCDIC)
AbstractSickle cell disease (SCD) is a genetic disorder predominantly affecting people of African descent and is associated with significant morbidity and mortality. To improve SCD outcomes, the National Heart Lung and Blood Institute funded eight centers to participate in the SCD Implementation Consortium. Sites were required to each recruit 300 individuals with SCD, over 20 months. We aim to describe recruitment strategies and challenges encountered. Participants aged 15–45 years with confirmed diagnosis of SCD were eligible. Descriptive statistics were used to analyze the effectiveness of each recruitment strategy. A total of 2432 participants were recruited. Maj ority (95.3%) were African American. Successful strategies were recruitment from clinics (68.1%) and affiliated sites (15.6%). Recruitment at community events, emergency departments and pain centers had the lowest yield. Challenges included saturation of strategies and time constraints. Effective re cruitment of participants in multi-site studies requires multiple strategies to achieve adequate sample sizes.
We describe the most highly recommended generic and disease-specific PRO tools in SCD and discuss the challenges of incorporating them in clinical practice. EXPERT OPINION: PRO measures are essential to incorporate into SCD clinical trials either as primary or secondary outcomes. The use of PRO measures in SCD facilitates a patient-centered approach, which is likely to lead to improved outcomes. Significant challenges remain in adapting PRO tools to routine clinical use and in developing countries. PMID: 33034214 [PubMed - as supplied by publisher]
(University of Illinois at Chicago) Researchers at the University of Illinois Chicago will lead a $7.1 million, five-year national study to determine the effectiveness of acupuncture and guided relaxation for people with chronic pain from sickle cell disease. The National Institutes of Health grant is part of its Helping to End Addiction Long-term Initiative. The initiative aims to improve prevention and treatment strategies for opioid misuse and addiction and to enhance pain management.
This study reviewed the complications of LC in children. MEDLINE/PubMed, CENTRAL and Lilacs were reviewed for LC. Studies in patients ≤ 18 years of age published in English, Portuguese or Spanish were selected by two independent reviewers. Data were collected for patients’ characteristics, surgical information, complications, mortality and follow-up. Twenty-four papers were identified and offered 2783 patients. Mean age was 11 years (3 months–18 years). In the 93/2783 (3.3%) complications, single-port procedures were associated with seven (7.5%), 3/4-port with 81 (87.1%) an...
Conclusion: Intermittent blood transfusion remains a common practice for the management of children with acute SCD complications. Main indications were acute anemic crises, severe pain crises, ACS, and stroke. In limited resource settings, such as Yemen, conservative transfusion policy appears to be appropriate. PMID: 32908695 [PubMed]
Publication date: September 2020Source: Annals of Emergency Medicine, Volume 76, Issue 3, SupplementAuthor(s): Sherraine Della-Moretta, Luca Delatore, Michael Purcell, Ying Huang, Melanie Heinlein, Eric Adkins, Payal Desai
Publication date: September 2020Source: Annals of Emergency Medicine, Volume 76, Issue 3, SupplementAuthor(s): David C. Brousseau, Elizabeth R. Alpern, James M. Chamberlain, Angela M. Ellison, Lalit Bajaj, Daniel M. Cohen, Selena Hariharan, Lawrence J. Cook, Monica Harding, Julie Panepinto, Pediatric Emergency Care Applied Research Network (PECARN)
But no change in opioid use observed for those receiving medical marijuana certification
Conclusions: In sum, our results suggest that total cholesterol, HDL-C, and LDL-C levels are associated with hemolysis and anemia markers and, most importantly, with clinical complications related to vasculopathy in SCA. PMID: 32884585 [PubMed - in process]
CONCLUSION: We observed that arginine and ibuprofen could produce additional analgesic effects when combined with morphine in vaso-occlusive crisis. PMID: 32885834 [PubMed - in process]
Sickle cell disease (SCD) is phenotypically heterogenic. One major genetic modifying factor is the patient ’s level of fetal hemoglobin (HbF). The latter is determined by the patient’s β-globin gene cluster haplotype and cis-acting and trans-acting single gene polymorphisms (SNP) at other distant quantitative trait loci (QTL). The Arab/India haplotype is associated with persistently high HbF levels and also a relatively mild phenotype. This haplotype carries the Xmn1 (C/T) SNP, rs 7482144 in the HBG2 locus. The major identified trans-acting QTL contain SNPs residing in the BCL11A in chromosome 2 and the HM...