Process and strategies for patient engagement and outreach in the Sickle Cell Disease (SCD) community to promote clinical trial participation.

Introduction: Sickle cell disease (SCD) is the most common inherited blood disorder in the United States. The Cure Sickle Cell Initiative (CureSCi) was created by the National Heart, Lung and Blood Institute (NHLBI) to improve the lives of people with SCD by accelerating the advancement of safe and promising genetic therapies, engaging the SCD community and healthcare providers, and encouraging collaboration among stakeholders. CureSCi is a collaborative, patient-focused research effort that includes patients at every level of the Initiative.

Assessing clinical investigators' perceptions of relevance and competency of clinical trials skills: An international AIDS Malignancy Consortium (AMC) study.

Introduction: The AIDS Malignancy Consortium (AMC) conducts clinical trials of therapeutic and prevention strategies for cancer in people living with HIV. With its recent expansion to Sub-Saharan Africa and Latin America, there was a need to increase the competence of clinical investigators (CIs) to implement clinical trials in these regions.

Methods: AMC CIs were invited to complete a survey to assess role-relevance and self-perceived competence based on the Joint Task Force for Clinical Trials Competency domains.

Participant characteristics and clinical trial decision-making factors in AIDS malignancy consortium treatment trials for HIV-infected persons with cancer (AMC #S006).

Background: Overall, people living with HIV/AIDS (PLWHA) are living longer, but compared with the general population, they are at elevated risk for numerous AIDS-defining and non-AIDS-defining cancers. The AIDS Malignancy Consortium (AMC) is dedicated to conducting clinical trials aimed at prevention and treatment of cancers among PLWHA.

Objective: To examine patient-level characteristics and perceptions that influence decision-making regarding AMC treatment trial participation.

Implementation of a tailored kiosk-based injury prevention program in pediatric primary care.

This study identified behavioral and organizational barriers and facilitators related to the implementation of a clinic-based pediatric injury prevention program. Safe N' Sound (SNS), an evidence-based tailored injury prevention program designed for pediatric primary care, was implemented in five pediatric clinics in North Carolina. Office managers participated in structured interviews; health care providers participated in focus groups.

An assessment of the perceived benefits and challenges of participating in a practice-based research network.

Background: A survey was conducted to describe the benefits of and challenges to practitioner participation in the Practitioners Engaged in Applied Research and Learning (PEARL) Network, a dental practice-based research network (PBRN). The results were compared with results from medical PBRNs across different tiers of participation (based on practitioner-investigators previous involvement with PEARL research protocols).

Methods: A 39-item web-based survey addressed the benefits of PBRN participation on three levels: individual/practitioner, practice (office), and community/professional.