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.
Source: Journal of Immigrant and Minority Health - Category: International Medicine & Public Health Source Type: research

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Clin J Oncol Nurs. 2021 Oct 1;25(5):605-607. doi: 10.1188/21.CJON.605-607.ABSTRACTOwing to the lack of specialized care and the unpredictable nature of acute pain episodes in adults with sickle cell disease (SCD), emergency departments have been largely used to provide care for these patients. The lack of specialized care for patients with SCD portends higher healthcare costs and lower health-related quality of life. Although study findings have shown that using multiple models for SCD care is feasible and cost-effective, nurses' awareness of evidence-based guidelines and care models for acute pain management in ambulatory...
Source: Clinical Journal of Oncology Nursing - Category: Nursing Authors: Source Type: research
This study assessed whether there were agerelated differences in SCD index therapy type and SCD-related medication utilization.DESIGN AND PATIENTS: Texas Medicaid prescription claims from September 1, 2011 to August 31, 2016 were retrospectively analyzed for SCD patients aged 2-63 years who received one or more SCD-related medications (hydroxyurea, opioid, or nonopioid analgesics).OUTCOME MEASURES: The primary outcomes were SCD index drug type and medication utilization: hydroxyurea adherence, and days' supply of opioid, and nonopioid analgesics. Chi-square, analysis of variance, and Kruskal-Wallis tests were used.RESULTS:...
Source: Journal of Opioid Management - Category: Addiction Authors: Source Type: research
Title: Drug Might Stop Heart Trouble Linked to Sickle Cell AnemiaCategory: Health NewsCreated: 9/17/2021 12:00:00 AMLast Editorial Review: 9/17/2021 12:00:00 AM
Source: MedicineNet Chronic Pain General - Category: Anesthesiology Source Type: news
Conditions:   Sickle Cell Disease;   Pain;   Acupuncture;   Quantitative Sensory Testing;   Magnetic Resonance Imaging;   Circulating Biomarkers;   Electroencephalography;   Functional Near-infrared Spectroscopy Interventions:   Procedure: acupuncture;   Other: Sham Sponsor:   Indiana University Recruiting
Source: ClinicalTrials.gov - Category: Research Source Type: clinical trials
Notice NOT-AT-21-017 from the NIH Guide for Grants and Contracts
Source: NIH Funding Opportunities (Notices, PA, RFA) - Category: Research Source Type: funding
Notice NOT-AT-21-018 from the NIH Guide for Grants and Contracts
Source: NIH Funding Opportunities (Notices, PA, RFA) - Category: Research Source Type: funding
Paediatr Int Child Health. 2021 Sep 3:1-7. doi: 10.1080/20469047.2021.1936393. Online ahead of print.ABSTRACTSickle cell anaemia (SCA) is a chronic haemolytic anaemia associated with vaso-occlusive painful crises which may affect several systems including the gastro-intestinal system, resulting in abdominal pain. The concurrence of inflammatory bowel disease and haemoglobinopathy is rare. No previously reported concurrent cases of both SCA and ulcerative colitis (UC) in sub-Saharan Africa were found in the literature. A 16-year-old girl with concurrent SCA and UC is presented. She was admitted to University College Hospita...
Source: Paediatrics and international child health - Category: Pediatrics Authors: Source Type: research
In the current issue of the Journal of Emergency Nursing, Linton et  al1 report on their successful implementation of a clinical support tool (a banner to recommend emergency severity index [ESI] triage level 2) to improve the care of sickle cell disease (SCD) for individuals presenting to the emergency department with severe pain referred to as vaso-occlusive cris is (VOC). The researchers and clinical team are to be commended. The correct assignment of a high priority triage level is evidence-based and important to facilitate rapid placement in a treatment area to expedite pain management.
Source: Journal of Emergency Nursing: JEN - Category: Nursing Authors: Tags: Invited Commentary Source Type: research
This study investigated the feasibility of a biobehavioral intervention as an adjunct nonpharmacological therapy to assist in the self-management of chronic pain. A randomized, controlled clinical trial of hypnosis was conducted in outpatients with SCD (n = 31). Patient-reported outcomes (PROs) administered at baseline, five, and twelve weeks from both groups included pain frequency, intensity, and quality (Pain Impact Scale (PIQ) and Numerical Rating Scales); anxiety (State-Trait Anxiety Inventory), coping strategies (Coping Strategies Scale), sleep (Pittsburgh Sleep Quality Index (PSQI)), and depression (Beck Depression ...
Source: Evidence-based Complementary and Alternative Medicine - Category: Complementary Medicine Authors: Source Type: research
CONCLUSION: Early use of ketamine in adults with VOC resulted in a meaningful reduction in pain scores over a 2-h period and reduced the cumulative morphine dose in the ED with no significant drug-related side effects in the ketamine treated group.PMID:34449939 | DOI:10.1111/acem.14382
Source: Accident and Emergency Nursing - Category: Emergency Medicine Authors: Source Type: research
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