Cancer caregivers in emerging and young adulthood (ages 18-35) are an underresearched and unsupported group of caregivers, and yet they are not uncommon. To address this critical support gap, the goal of this study is to develop and pilot test a caregiving support intervention specifically tailored for emerging and young adults caring for a parent with cancer. This phase of the study is intended to capture feedback on the intervention via focus groups with emerging and young adult caregivers of a parent with cancer.
This study gives people who were part of an earlier Avalyn research protocol with inhaled pirfenidone versus placebo an opportunity to convert to open label or active investigational drug treatment. The goal is to continue learning additional safety and efficacy information in patients over a longer period of treatment time. Pulmonary fibrosis is a disorder with a poor prognosis that is often far worse than many cancers with limited treatment options. While this medication has yet to be proven effective, the safety profile currently is acceptable and the risks versus benefits favor offering this opportunity to patients with informed consent.
The purpose of this research is to explore the effects of participation in a pickleball community-based exercise program on function in people with Parkinson's disease (PwPD). Individuals will engage in an 8-week instructional pickleball exercise program designed specifically by Movement Disorder Specialists at the Medical University of South Carolina for PwPD. The pickleball training program involves warm-up exercises, stroke mechanics, fall safety and recovery technique training, effective movement pattern drills, game play strategies, and match play. We aim to quantify the motor function, balance, mobility, and quality of life outcomes through clinical assessments and questionnaires before and after participation in the Pick it Up Pickleball training program. This research will establish an evidence base for pickleball as a therapeutic intervention, opening the door for additional accessible and engaging exercise options for the PD community.
This cross-sectional study aims to examine the impact of visual cues on listeners' perception of speaker age. Eligible speaking participants include adult males and females between the ages of 18–90 years old without voice or hearing disorders. Eligibility will be determined by research coordinators via patient demographic forms and validated voice and hearing assessments. Speaking participants will have two audio recordings taken: (1) sustained vowel sound and (2) reading of the Consensus Auditory-Perceptual Evaluation of Voice (CAPE-V), a standardized tool employed to evaluate the perceptual characteristics of voice quality across a wide age range. To develop the materials for the listening participants, CAPE-V audio recordings obtained from the speaking participants will be systematically paired with race and age-matched photographs obtained from a publicly available database. The finalized materials will encompass three experimental conditions: (1) audio only, (2) audio presented with a standardized photograph of an individual matched to the speaker's gender and age, and (3) audio presented with a standardized photograph of an individual matched for gender but differing in age. Naïve listening participants, blinded to the experimental conditions, will then be presented with these materials in a randomized order and asked to estimate the perceived ages of the speakers. Additionally, basic acoustic analyses of each sustained vowel sound recording (e.g., jitter, shimmer) will be conducted by a trained professional using the speech analysis software PRAAT.
This study is enrolling two different groups of individuals. The first group are those individuals referred for right heart catheterization (RHC), which is a procedure performed to check heart pressure taken inside the heart. The second group of individuals are those who have tricuspid regurgitation (TR) (blood that leaks due to improper valve closure) and are undergoing tricuspid valve intervention to correct the regurgitation. The RHC group will be referred to as the control group and the tricuspid intervention group will be the treatment group in this study. This study involves collecting existing medical records on both groups, as well as an arterial (from an artery) blood sample and venous (from a vein) blood sample from the vein that carries blood away from the liver. The control group will not involve any additional procedures or follow up. The TR population will perform a 6 minute hall walk test before their tricuspid valve intervention and again during the six month post procedure follow up. The TR group will also have repeat arterial and venous blood collection at the six month follow up. The TR group will have data collected for up to two years post tricuspid valve intervention.
The purpose of this rollover study is to investigate the long-term safety of etavopivat in participants11 months of age and older with SCD or thalassaemia who have completed a treatment period in previous etavopivat studies (parent studies, see Section 4.1). Long-term clinical efficacy measures of etavopivat treatment will also be assessed. This study will also ensure that participants who are benefiting from etavopivat treatment have prolonged access to the drug in the time before it is commercially available in their country.
The goal of the current project is to gather preliminary data from adults across the United States using an online survey study regarding alternative cannabinoid use, motivations, and experiences. We will also conduct interviews with some participants to gather more open-ended responses regarding the targets of interest in order to inform future work about alternative cannabinoids.
This study will see if the experimental medicine MTX-463 can slow or stop idiopathic pulmonary fibrosis (IPF) from worsening in people at least 40 years of age or older. Participants will receive either MTX-463 or a placebo (which contains no active drug) through an intravenous infusion once every 4 weeks, for a total of 6 infusions. Overall, participants will attend a total of 9 visits over the course of approximately 32 weeks, or roughly 8 months.
The purpose of this research study is to determine the best treatment goals for patients with active CD. Researchers are investigating how treating and monitoring CD to meet specific treatment goals will keep your disease under control (remission) and decrease complications such as hospitalizations and surgeries. Group 1 treatment goals include IUS response (if the drug is improving your CD) and IUS assessed transmural healing (healing of all bowel layers), clinical remission (normalization of CD symptoms), and biomarker remission (improvement in stool and blood tests that show inflammation). Group 2 treatment goals include clinical remission and biomarker remission. Comparing the treatment goals in these groups may inform doctors how best to manage CD in the future. Approximately 304 people will be enrolled in this study. This research study will involve receiving 300 mg of vedolizumab as an intravenous (IV) infusion into your arm at Weeks 0, 2, 6, 10, and 14, then every 4 or 8 weeks thereafter.
Half of cancer caregivers in the US are young adults (YA) (age 18-35) caring for a parent with advanced cancer. This presents communication and quality of life challenges for both the young adult child caregiver and parent with cancer; however, this dyad (e.g., two people together) has not been well studied. We will conduct interviews with young adult child caregivers and parents with cancer to learn more about communication challenges and support needs in this dyad. Dyad members will also complete self-report measures asking about mood, coping, communication and quality of life. Findings will inform the development of an intervention to improve dyadic communication and quality of life.