The need for primary care providers in the clinical management of hypermobility spectrum disorders and ehlers-danlos syndrome: a call to action.

Patients with joint-hypermobility and joint-hypermobility spectrum disorders (HSD), including hypermobile Ehlers-Danlos Syndromes (EDS) present numerous co-morbid concerns, and multidisciplinary care has been recommended. The complexity of these patient's needs and increased demand for medical services have resulted in long delays for diagnosis and treatment and exhausted extant clinical resources. Strategies must be considered to ensure patient needs are met in a timely fashion.

Improving Access to Patient-Focused, Decentralized Clinical Trials Requires Streamlined Regulatory Requirements: An ASCO Research Statement.

Strategies to bring clinical trials closer to patients gained momentum during the COVID-19 pandemic, enabling more participants to receive treatment and/or testing in their local communities. Incorporation of decentralized trial elements presents both opportunities and challenges, spanning regulatory, technical, and operational aspects. This ASCO research statement includes timely consensus-driven recommendations and a call for engagement of all research stakeholders.

Patient and Parent Knowledge, Understanding, and Concerns After a New Diagnosis of Ehlers Danlos Syndrome.

Introduction: After diagnosis of Ehlers Danlos Syndrome (EDS), it is unclear what information patients and parents need and understand about EDS. The objective of this study is to characterize patient and parent knowledge and concerns about EDS after a diagnosis of EDS is made to determine patient and parent concerns and identify barriers that cause discomfort with the diagnosis.

Methods: A convenience sample of patient and parent dyads were recruited after new diagnosis of EDS.

Investigation of patients' understanding of fibromyalgia: Results from an online qualitative survey.

Objective: An important component to effective fibromyalgia treatment is patient education about the condition. While previous educational interventions have been developed, these have not incorporated the lived experiences of patients and may not address common misunderstandings among those who may benefit from these interventions. This study aimed to explore understanding, confusion, and gaps in knowledge about fibromyalgia among those who report a fibromyalgia diagnosis.

Nociplastic Pain and Pain-Motivated Drinking in Alcohol Use Disorder.

Heavy chronic alcohol use may produce pain amplification through neurochemical and neuroplastic changes at multiple levels of the nervous system. Similar changes are thought to underlie nociplastic pain. The American College of Rheumatology Fibromyalgia Survey has been used as a surrogate for nociplastic pain, including among individuals with alcohol use disorder (AUD).

Barriers to the Diagnosis, Care, and Management of Pediatric Patients With Ehlers-Danlos Syndrome in the United States: A Qualitative Analysis.

Ehlers-Danlos Syndromes (EDS) are a family of heritable connective tissue diseases. Primary practitioners are capable of diagnosing and managing EDS; however, few are knowledgeable and comfortable enough to see patients with EDS, resulting in delays in diagnosis and care. This study explores the barriers physicians experience with diagnosing, managing, and caring for patients with EDS, and potential resolutions to those barriers.

Cell-based versus corticosteroid injections for knee pain in osteoarthritis: a randomized phase 3 trial.

Various types of cellular injection have become a popular and costly treatment option for patients with knee osteoarthritis despite a paucity of literature establishing relative efficacy to each other or corticosteroid injections. Here we aimed to identify the safety and efficacy of cell injections from autologous bone marrow aspirate concentrate, autologous adipose stromal vascular fraction and allogeneic human umbilical cord tissue-derived mesenchymal stromal cells, in comparison to corticosteroid injection (CSI). The study was a phase 2/3, four-arm parallel, multicenter, single-blind, randomized, controlled clinical trial with 480 patients with a diagnosis of knee osteoarthritis (Kellgren-Lawrence II-IV).

Towards the international interoperability of clinical research networks for rare diseases: recommendations from the IRDiRC Task Force.

Background: Many patients with rare diseases are still lacking a timely diagnosis and approved therapies for their condition despite the tremendous efforts of the research community, biopharmaceutical, medical device industries, and patient support groups. The development of clinical research networks for rare diseases offers a tremendous opportunity for patients and multi-disciplinary teams to collaborate, share expertise, gain better understanding on specific rare diseases, and accelerate clinical research and innovation. Clinical Research Networks have been developed at a national or continental level, but global collaborative efforts to connect them are still lacking.

Health Competence Beliefs and Health-Related Quality of Life Among Adolescent and Young Adult Survivors of Childhood Cancer and Healthy Peers.

Adolescent and young adult (AYA) survivors of childhood cancer are at risk for late-effects that can impact how one perceives their health and well-being. Understanding beliefs about health competence and well-being among survivors can help identify support needs and increase adherence to long-term follow-up guidelines. This study examined differences in health competence beliefs and health-related quality of life (HRQOL) between AYA survivors of childhood cancer and matched healthy peers.

Phase II study of dichloroacetate, an inhibitor of pyruvate dehydrogenase, in combination with chemoradiotherapy for unresected, locally advanced head and neck squamous cell carcinoma.

Chemoradiotherapy (CRT) for locally-advanced head and neck squamous cell carcinoma (LA-HSNCC) yields 5-year survival rates near 50% despite causing significant toxicity. Dichloroacetate (DCA), a pyruvate dehydrogenase kinase metabolic inhibitor, reduces tumor lactate production and has been used in cancer therapy previously. The safety of adding this agent to CRT is unknown.

Modeling transmission dynamics and effectiveness of worker screening programs for SARS-CoV-2 in pork processing plants.

Pork processing plants were apparent hotspots for SARS-CoV2 in the spring of 2020. As a result, the swine industry was confronted with a major occupational health, financial, and animal welfare crisis. The objective of this work was to describe the epidemiological situation within processing plants, develop mathematical models to simulate transmission in these plants, and test the effectiveness of routine PCR screening at minimizing SARS-CoV2 circulation.

Safety and Efficacy of Pembrolizumab With Chemoradiotherapy in Locally Advanced Head and Neck Squamous Cell Carcinoma: A Phase IB Study.

Purpose: Pembrolizumab is a humanized monoclonal antibody that blocks interaction between programmed death receptor-1 (PD-1) and its ligands (PD-L1, PD-L2). Although pembrolizumab is approved for recurrent/metastatic head and neck squamous cell carcinoma (HNSCC), its role in the management of locally advanced (LA) disease is not defined. We report a phase IB study evaluating the safety and efficacy of adding pembrolizumab to cisplatin-based chemoradiotherapy in patients with LA HNSCC.

Perspectives of Oncology Nursing and Investigational Pharmacy in Oncology Research.

Objectives: This article will provide an overview of the purpose, structure, and function of an investigational pharmacy in oncology clinical research. It will also discuss the role of the oncology nurse in managing investigational drugs (ID) when caring for a patient receiving treatment on a clinical trial and the importance of their role in the trial process.

Data Sources: Government regulations, professional guidelines, and best practices.

Sexual behaviors, risks, and sexual health outcomes for adolescent females following bariatric surgery.

Background: Adolescents females with severe obesity are less likely to be sexually active, but those who are sexually active engage in risky sexual behaviors.

Objectives: To examine patterns and predictors of sexual risk behaviors, contraception practices, and sexual health outcomes in female adolescents with severe obesity who did or did not undergo bariatric surgery across 4 years.

Setting: Five academic medical centers.

Delivering Precision Oncology in a Community Cancer Program: Results From a Prospective Observational Study.

Introduction: Precision oncology (PO) is a growing treatment approach in the era of next-generation sequencing (NGS) and matched therapies. Effective delivery of PO in the community has not been extensively studied. Our program developed a virtual molecular tumor board (MTB) strategy to help guide PO care.

Implementing Precision Medicine Programs and Clinical Trials in the Community-Based Oncology Practice: Barriers and Best Practices.

There has been a rapid uptick in the pace of oncology precision medicine advancements over the past several decades as a result of increasingly sophisticated technology and the ability to study more patients through innovative trial designs. As more precision oncology approaches are developed, the need for precision medicine trials is increasing in the community setting, where most patients with cancer are treated. However, community-based practices, as well as some academic centers, may face unique barriers to implementing precision medicine programs and trials within their communities.

Significance of Nonphysical Predictors of Distress in Cancer Survivors.

Background: The Distress Thermometer (DT) is a well-validated tool that is frequently used in patients with cancer to screen for general distress and to generate referrals. However, a majority of the DT problem list items relate to physical concerns; this may lead to psychosocial issues being overshadowed.

Objectives: The purpose of the current study is to examine the endorsement rates for nonphysical items, as well as the relationship between these items and overall DT scores.

The Relationship Between Perceived Racism/Discrimination and Health Among Black American Women: a Review of the Literature from 2003 to 2013.

Objectives: The purpose of this paper was to systematically review the literature investigating the relationship between perceived racism/discrimination and health among black American women.

Methods: Searches for empirical studies published from January 2003 to December 2013 were conducted using PubMed and PsycInfo. Articles were assessed for possible inclusion using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2009 framework.

An analysis of the distress thermometer problem list and distress in patients with cancer.

Purpose: Patients with a cancer diagnosis experience complex issues that can cause distress. The purpose of this study is to identify factors associated with overall distress for a diverse population of cancer survivors.

Methods: Researchers conducted a secondary data analysis of distress ratings (n = 1205) for people receiving outpatient care at a Midwestern US cancer center from 2005 to 2009 to describe the relationships between distress factors and need for assessment of distress.

Adult women's attitudes toward the HPV vaccine.

Aims: Two human papillomavirus (HPV) vaccines have demonstrated efficacy in preventing HPV infection and are currently being administered to adolescent girls in several countries. Although the most efficient HPV prevention strategy is immunizing adolescents before there is any risk of exposure, adult women also may benefit from vaccination. This study aimed to explore the attitudes of women aged 27-55 years toward the HPV vaccine.