Amyotrophic Lateral Sclerosis (ALS) Tissue Donation Program
Amyotrophic Lateral SclerosisNeurodegenerative Disease1 moreDespite significant progress in the identification of mechanisms involved in motor neuron degeneration in Amyotrophic Lateral Sclerosis (ALS) and other motor system diseases, the actual pathogenesis and cause of these diseases remains unknown. Effective treatment of these diseases are dependent on the elucidation of their causes. The availability of diseased and control human tissues will be a critical resource for this research progress. . Samples of serum, spinal fluid, and urine from patients with motor system diseases can be used to study biochemical and genetic differences compared to tissues of neurologic disease controls and normal controls. Furthermore, the availability of autopsied CNS, PNS, as well as other tissues from patients with ALS or suspected ALS are useful for current and future research studies into the disease. Therefore, we propose to institute a Tissue Bank containing blood, urine, and cerebrospinal fluid donated from not only ALS and other motor neuron disease patients, but also those with other neurologic diseases and normals whose tissue can be used as controls. In addition there will be an autopsy band for post-mortem specimens of ALS and other motor neuron disease patients. Each specimen, whether from a living patient or autopsy will be de-identified and accompanied by a standard set of clinical information collected from the medical records in order that each specimen is characterized with the relevant clinical information to maximize the usefulness of the specimens. Once established, this tissue bank will provide a resource in which a large number of samples will be readily available and expedite research by circumventing the delays in collecting specimens prospectively. These specimens will be used for research in the ALS Center of Hope at Drexel University College of Medicine and shared with any outside investigator with a valid IRB approved protocol.
Investigation of Coronary and Pulmonary Circulatory Parameters in Systemic Sclerosis
Systemic SclerosisAim: Determination of frequency and nature of coronary involvement (including epicardial and microvascular) among scleroderma patients referred for right heart catheterization.
Assessment of Postural Orientation and Equilibrium In Early Amyotrophic Lateral Sclerosis (ALS)...
Amyotrophic Lateral SclerosisThe purpose of this pilot study is to characterize changes in postural orientation and equilibrium in early diagnosed ALS patient. The investigators plan to cross validate the use of a standardized test of equilibrium (EquiTest, Computerized Dynamic Posturography - CDP) in early diagnosed ALS patients.
Factors That Influence Compliance With Disease-Modifying Therapy in Multiple Sclerosis
Multiple SclerosisThe purpose of this study is to evaluate the coorelation between patient factors, health care provider factors, drug factors and compliance in patients with relapsing forms of multiple sclerosis (RMS) treated with Disease Modifying Agents (DMA). We hypothesize that a number of factors influence compliance with DMA's.
Costs, Quality of Life and Functional Outcomes in Veterans Treated for Multiple Sclerosis With Beta-Interferon...
Multiple SclerosisThe treatment of multiple sclerosis was evolving in light of specific drug therapies to treat the disease, refinements and acceptance of imaging with MRI to diagnose and monitor the disease process, and progress in understanding the pathogenesis of the inflammatory demyelinating process. The result was to raise new issues in the treatment of the disease, which are then being addressed by studies, including when to initiate treatment and the treatment of partial responders to existing therapies. Paralleling strides in treatment, and of particular importance to the Veterans Administration, was the effectiveness of such therapies, both in terms of cost to the VA Health Care System and quality of life of veterans with multiple sclerosis. This study addressed these issues.
Efficacy of Noninvasive Ventilation in Amyotrophic Lateral Sclerosis (ALS)
Amyotrophic Lateral SclerosisMotor Neuron DiseaseThis study will test the hypothesis that noninvasive ventilation (NIV) as prescribed in current medical practice for use in amyotrophic Lateral Sclerosis (ALS) patients fails to deliver adequate breathing support over a night of use in the patient's home. ALS patients who come to the ALS Center for their routine 3 month follow up exam and are currently using NIV will be asked to complete questionnaires regarding their quality of sleep, quality of life and general level of function, and to undergo a home sleep study, using a safe, comfortable and reliable breathing monitoring system during a night of sleep. If the questionnaires or the sleep study show failure of the breathing device, the investigators will work with the patient to fix the problem and then offer a second study to make sure that the changes were helpful. The results of this study may help to develop subsequent studies and to improve the guidelines used for care of ALS patients.
Resilience-Based Program for Support Partners of Persons With Multiple Sclerosis
Multiple SclerosisThis is a pilot feasibility study to examine the impact of providing a non-therapeutic resilience-based coaching telehealth program to the Support Partners (SP) of persons with MS (PwMS). Cognitive difficulties are a prominent feature in PwMS and prove to be a challenge for PwMS and the close family members that care for them. This study is a pilot telehealth program that aims to address these needs and improve the overall well-being of adults with MS and their Support Partners. A manualized program was developed utilizing the previous research study conducted literature, and the expertise and experience of the research study team. Funding was sought and obtained for 30 pairs to participate in the pilot. The 6-session program will address needs identified by this population and improve knowledge of cognition in PwMS. Study Objectives: Primary Objective: To conduct an evaluation of the feasibility of the resilience program by examining: Recruitment (i.e. willingness to participate in program) Participation rates and attrition Participant satisfaction of the program. Secondary Objective (Support Partner): To assess the potential long-term benefits of the program to Support Partners of PwMS. Program benefits will be assessed using the following outcomes: Sense of Competencies Understanding of cognitive impairment in MS Caregiver burden Positive Emotions. Secondary Objective (PwMS): To assess the potential long-term benefits of the program to PwMS. Program benefits will be assessed using the following outcomes: Relationship Satisfaction Perceived Support.
Balance, Trunk Impairment and Fear of Falling in Multiple Sclerosis Patients With Incontinence
Multiple SclerosisPhysical Therapy1 moreThe aim of the present study was to examine balance, trunk impairment, and fear of falling in MS patients with incontinence. Clinical symptoms of the MS patients are heterogenous, and they vary according to the lesion levels and the duration and the type of the disease. In the neurologic group,especially in MS patients, incontinence is observed even at early stages. Pelvic floor muscles contribute to continence by stabilizing the bladder neck and increasing the intraurethral pressure. Furthermore, they mechanically support the spine and the pelvis.This mechanical support is attained through an increase in sacroiliac joint stiffness and intra-abdominal pressure changes, which are important for spinal control. Along with incontinence, this mechanical support deteriorates resulting in some problems. By this way, postural function of pelvic floor muscles may alter in individuals with incontinence, and thus, lumbopelvic stabilization may be negatively affected. In addition, the activity of trunk muscles changes in individuals with incontinence, which may result in spinal movement and affect the posture. Therefore, balance disorders may develop. Postural sways caused by balance disorders and the decrease in postural corrections have been listed among risk the factors associated with falling. When literature is examined, there exists no study examining the effects of incontinence on balance, trunk impairment, and fear of falling in MS patients. For all these reasons, investigators think that incontinence in MS patients has an effect on balance, trunk impairment, and fear of fall.
Collection of Blood Samples From Patients With Relapsing MS Who Developed ITP After Receiving Lemtrada...
Multiple SclerosisPrimary Objective: To collect blood samples in a new cohort of Relapsing Forms of Multiple Sclerosis (RMS) participants who had developed immune thrombocytopenic purpura (ITP) after LEMTRADA treatment, for future Deoxyribonucleic acid (DNA) analysis as part of a global biomarker project assessing pre-identified candidate single nucleotide polymorphisms (SNPs) associated to the development of ITP after LEMTRADA treatment in RMS participants.
Views on Physical Activity Following a Relapse in People With Multiple Sclerosis
Multiple SclerosisMultiple Sclerosis (MS) is the most common cause of neurological disability in young adults. Relapsing Remitting Multiple Sclerosis (RRMS) is the most frequent form of MS at the time of diagnosis characterised by relapses, followed by remission. Relapses can result in a sudden change in physical or cognitive symptoms, often impacting a person's ability to function with family, friends and work. The National Institute for Health and Care Excellence (NICE) Clinical Guidelines for MS recommend encouraging people with MS to exercise regularly but does not provide specific advice on whether exercise should be undertaken during a relapse. Despite the wealth of literature documenting the benefits of exercise for people with MS insufficient evidence exists about exercise during relapse. Research has improved our understanding of what helps people with MS to be physically active and difficulties people encounter but has not provided evidence for how this is affected by a relapse. The aim of this study is to understand the attitudes of people with MS to physical activity following relapse, including factors that help them to be active and barriers to physical activity. The information gathered will be useful to inform future research and guide the advice health professionals may offer. Fifteen adults with RRMS who have had a relapse in the preceding 3-4 months will be recruited if their Expanded Disability Status Scale (EDSS) is <7 (EDSS scale is used to quantify disability in MS and monitor changes in the level of disability over time) and they agree to being audio -recorded at interviews. The recruitment will take place at the weekly MS relapse clinic at a hospital in London, UK. Participants will be asked to complete two questionnaires (Patient Determined Disease Steps and the International Physical Activity Questionnaire), answer demographic questions and spend one hour being interviewed by a researcher. It is anticipated the recruitment and interviews be carried out by March 2019.