The number of people of all ages in the U.S. who have cancer is projected to grow from 11.8 million in 2005 to 18.2 million in 2020, a 55% increase.
Despite many remarkable milestones in cancer prevention, early detection, and treatment, many will still experience the catastrophic complications of a cancer diagnosis. With no options, patients and caregivers are thrust on a course that takes them through the cancer experience where they encounter the cognitive, psychosocial, emotional, physical and practical consequences of the disease and its treatment. While the diagnosis of cancer, in and of itself, can be a precursor to significant changes in any or all aspects of a patient’s being, the diagnosis of a brain tumor can lead to a more aggravating experience.
The Center for Quality and Outcomes Research (CQOR) has been established to provide a forum for a multidisciplinary team of patients, caregivers, health providers, scientists, and policy makers to make an impact in reducing the burden of cancer. The need to provide comprehensive, holistic care gains increasing importance as cancer care becomes more complex. Our research explores novel strategies to prevent, identify and manage common symptoms in patients with cancer; measure and enhance quality of life in patients and caregivers; and improve patient and health outcomes.
Our current studies are directed at optimizing seizure prophylaxis (prevention), reducing risks associated with venous thromboembolism (blood clot that forms within a vein), and managing peripheral neuropathies ( damage to or disease affecting nerves) in patients with neurological cancers. Our center also addresses the hidden morbidity (diseased state or symptoms) of cancer treatment – the effect on family caregivers. We believe that caring for caregivers is an important component of comprehensive and holistic clinical care.
Clinical Trials at the Center for Quality & Outcomes Research (CQOR)
Typing Keystroke Dynamics Study/Neuramatrix
The purpose of this study is to evaluate whether typing cadence or keystroke dynamics (i.e., the rhythm by which each individual types on a keyboard) is a meaningful non-invasive, natural environment neurological functional outcome measure in individuals diagnosed with early stage cancer or neurologic disorders and the caregivers of such individuals.
Providers can download the study flyer for Typing Dynamics/Neuramatrix.
Integrating Family Caregiver Support into Cancer Clinical Trials
The aim of this study is to assess the feasibility and acceptability of integrating family caregiver support into cancer clinical trials. Secondary aims include exploring the effects of family caregiver support on the well-being of the caregiver, the care-recipient and on the cancer clinical trial system.
Providers can download the study flyer for Caregivers & Cancer Clinical Trials.
CancerLife2: Patient-Driven Solution in Cancer Care (NCT03371147)
The primary purpose of this study is to evaluate the use of a digital information and communication platform (DICP) in improving outcomes in patients with cancer and their caregivers.
Providers can download the study flyer for CancerLife2.
The purpose of this exploratory study is to research the caregiver burden and coping strategies among family caregivers of cancer patients. Through this study, the investigators will identify the relationship between cognitive dysfunction (measured as a proxy rating by the caregiver), resilience, social support, cognitive appraisal, coping behavior, and caregiver burden, anxiety, and depression among family caregivers of patients with cancer.
Providers can download the Family Caregivers Study flyer.
Neurological Outcomes in Health and Disease
The purpose of this study is to collect clinical data and biological samples (including blood, tumor, cerebrospinal fluid, etc.) from patients with tumors, cancer and/or neurological disorders in order to assess potential strategies that could advance patient care.
Providers can download the pdf study flyer.
Caris Molecular Intelligence Repository
The objective of this study is the development of the Caris Molecular Intelligence® and Caris Centers of Excellence for Precision Medicine NetworkTM Outcomes-Associated Repository, a disease research database. This will allow for advancement in precision medicine and improvement of cancer care through the acquisition and sharing of valuable molecular tumor profiling information and clinical outcomes in a collaborative, secure environment.
Providers can download the Caris study flyer.
The primary purpose of this pilot study is to evaluate the feasibility and acceptability of a Mobile Digital Solution in monitoring and collecting symptom burden data. The proposed study is meant to be the preparatory work for an intervention study to test the effect of Mobile Digital Solutions on improving patient outcomes by fostering early interventions for symptom relief and support of patient and family caregiver quality of life (QOL).
Digital communication has been shown to affect how patients access and receive information, how they share health data, and how they interpret and make the data useful to stay healthy or when receiving medical treatment. CancerLife, one form of digital communication, is a mobile digital solution that allows patients to broadcast their health status inside a private invitation only group, text, email, and/or publicly in Facebook or Instagram. By doing, so the patient collects his/her own patient-reported outcomes data and then share this data with their doctor or care team.
Demographic information and patient-reported symptoms will be collected from study participants through CancerLife which they can download from their mobile device app store (Android or Apple). Participants will be asked to broadcast their emotional and physical status through a symptom list within the app as well as how that symptom is impacting their quality of life and activities of daily living. This data will be collected inside the application and display in easy to understand pie charts.
Providers can download the study flyer for CancerLife.
If you are interested in learning more about our quality of life and caregiving studies, please contact our Clinical Outcomes Research Scientist, Dr. Marlon Saria.