Rare Disease Patient Registry & Natural History Study - Coordination of Rare Diseases at Sanford...
Rare DisordersUndiagnosed Disorders316 moreCoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access. Visit sanfordresearch.org/CoRDS to enroll.
The EXPLORE MG Registry for Myasthenia Gravis
Myasthenia GravisThe purpose of this study is to create a Yale University Department of Neurology Myasthenia Gravis (MG) registry that will be used for current and future research projects involving the study of Myasthenia Gravis.
Diabetes, Falls, and Fractures
Diabetic Peripheral NeuropathyDiabetes7 moreComparing severity of diabetic peripheral neuropathy (small and large fibers including autonomic neuroapthy) to postural control and vestibular measurements
Exploring Outcomes and Characteristics of Myasthenia Gravis 2
Myasthenia GravisThe goal of this prospective observational study is to create a network repository of clinical data and biological samples to help researchers learn more about myasthenia gravis.
Muscle Recovery After Critical Illness
ICU Acquired WeaknessPost Intensive Care Unit Syndrome2 moreThe overarching goal of the proposed study is to determine the trajectories of physical recovery and cellular markers involved with the underlying failure to recover muscle after critical illness, while exploring which characteristics are associated with sustained physical disability. This proposal will examine muscle pathophysiology carefully aligned with physical function outcomes in order to longitudinally assess the recovery, or failed recovery, of muscle function in participants after critical illness: to examine the recovery of muscle and physical function in ICU survivors through longitudinal assessments to investigate the underlying cellular markers and mechanisms of muscle recovery in ICU survivors to determine which cellular markers contribute to physical disability in ICU survivors up to 1 year after hospital admission
Effect of Open Kinetic Chain Shoulder Exercises on Scapulothoracic Muscle Activity on Stable and...
Muscle WeaknessExerciseExercises used in shoulder rehabilitation compose of open kinetic chain and closed kinetic chain exercises.The force formed on the trunk and legs is transferred to the shoulder in open and closed kinetic chain exercises before shoulder muscles activation. It was shown that trunk and leg muscle activity changes when they are performed in different ground. But it is unknown how this alteration effect shoulder muscle activity. This will be provide a significance approach due to incremented of shoulder muscle activity is important for shoulder rehabilitation setting. To achieve this aim that is rising of muscle activity, various approach is applied including alteration of ground which individual performed exercise on it. And, it was shown that closed cinetic chain exercise which performed on different ground change shoulder muscle activity. However, it is unknown whether alteration of ground effect shoulder muscle activity or not in open cinetic chain exercise. That's why the aim of this study is to investigate alteration of scapulothoracic shoulder muscle activity in open cinetic chain shoulder exercise which enforced different ground.
A Study of Healthy Microbiome, Healthy Mind
Critical IllnessCOVID-196 moreResearchers are doing this study to find out if a high fermented food diet is tolerable, and if it will help improve quality of life after surviving a critical illness, including severe COVID-19, by promoting gut health recovery and decreasing gut inflammation.
Precision Medicine and Physical Function
FrailtyWeakness2 moreThe investigators aim to conduct a 12-week, single-arm, pre/post-intervention of b-hydroxy-methylbutyrate in persons aged 65 to 85 years to assess feasibility and acceptability of the intervention and study procedures, secondary outcomes of physical function and changes in multi-omics patterns, and exploratory outcomes that will allow the team to describe physical function phenotype. The investigators' primary outcomes are the: feasibility of the study procedures (including safety), feasibility of the intervention delivery, and acceptability of study procedures and measures. Secondary outcomes include: Objective and subjective physical function measures that predict disability including the 30-second sit-to-stand, knee strength, isokinetic strength, grip strength, gait speed, 400-m walk test, Pittsburgh Fatiguability, PROMIS global health-10, social support, anthropometry, National Institutes of Health (NIH) Cognitive toolbox, Automated Self-Administered 24-hour Dietary Assessment (ASA-24), Community Healthy Activities Model Programs (CHAMPS), Ultrasound Imaging, Magnetic Resonance Imaging (MRI), Changes in untargeted metabolomic profile data based on qualitative or semiquantitative analysis of the most probable detectable metabolites in laboratory samples , Discover potential metabolites that explain changes in physical function using a discovery science, precision medicine approach (discovery science approach that is exploratory)
The ME&MG Digital Solution for Autonomous Assessment of Myasthenia Gravis
Myasthenia GravisME&MG is a standalone software (digital solution) running on patients smartphones, connected to a web portal for physicians. It is intended to be used as an unsupervised digital self-assessment tool for the monitoring of disabilities in patients living with MG. ME&MG contains digital active tests for the assessment of ptosis, breathing, dysarthria, upper- and lower-limb (arms and legs) weakness, treatment follow-up, and validated e-questionnaires related to daily activities, pain, fatigue, sleep, and depression disorders. The objectives of this study are to validate the accuracy, reliability and reproducibility of the unsupervised at-home self-assessment of symptoms on the patient's smartphone with ME&MG versus the standard in-clinic testing, as well as to evaluate the safety of the solution, its usability and satisfaction.
The Effect of Spinal Manipulation on Hip Extension Strength and Jump Height
WeaknessMuscleThe purpose of this study is to study the effects of lumbar manipulation on hip extension strength and jump height in healthy subjects. Procedures to be followed: First, the subject will be asked to complete a medical history form. Then they will be instructed on the procedure for strength and jump testing. Next, range of motion of the low back will be measured. Then hip strength will be measured using a digital handheld measurement tool. The subject will then be asked to jump as high as they can on a floor mat. The subject will then receive a sealed envelope indicating the intervention they will to receive, either the manipulation or a fake manipulation. Instructions will be provided, and the subject will be positioned on a treatment table to receive the intervention. At this point, they will either receive the manipulation or fake manipulation on the right and left side. An immediate re-test of hip strength will be taken, and the subject will again jump as high as they can on a floor mat. Follow-up measures of these tests will be completed again 20 minutes after the intervention is given.