REAL Answers (Registry Expansion Analysis to Learn Answers)

Date Added
November 16th, 2022
PRO Number
Pro00124358
Researcher
Hermes Florez

List of Studies

Keywords
Anxiety, Blood Disorders, Cardiovascular, Genetics, Hypertension/ High Blood Pressure, Pain, Stroke, Stroke Recovery
Summary

Over 2400 people who have sickle cell disease and are between the ages of 15 and 45 have been enrolled into the National Registry (SCDIC-I) of patients with Sickle Cell Disease (SCD). A rich resource of natural history data, the SCDIC-I Registry has longitudinal data collected yearly since 2016 from patient surveys (e.g. self reported pain incidences, sleep, barriers to care, experiences during and after pregnancy), medical record abstraction (e.g. medications, transfusion history, co-morbidities) and laboratory results. The 150 patients (or 1200 among the 8 sites) will be selected from both MUSC adult and pediatric SCD clinics starting at 12 years of age; those not previously enrolled in the SCDIC National Registry will be offered the possibility to enroll in SCDIC-II.
We will look at the following:
1- Compare the effect of new SCD medications – crizanlizumab, voxelotor, and L-glutamine – on clinical outcomes in individuals with SCD.
2 - Identify genetic and genomic predictors of response to crizanlizumab, voxelotor, and L-glutamine
3 - Integrate study data into the CureSCi metadata catalog (MDC) to enhance future cross-study analyses.

Institution
MUSC
Recruitment Contact
Jayla Moss
843-792-4653
mossjay@musc.edu

A MULTI-CENTER STUDY OF NON-INVASIVE COLORECTAL CANCER EVALUATION IN CYSTIC FIBROSIS (NICE-CF)

Date Added
December 1st, 2022
PRO Number
Pro00124304
Researcher
Christina Mingora

List of Studies

Keywords
Cystic Fibrosis
Summary

This is a cross-sectional, multi-center study comparing stool-based testing (multi-target DNA-based test and quantitative FIT test) to standard of care colonoscopy for CRC screening in PwCF. The study includes an enrollment visit, two stool samples completed at home, a clinical screening colonoscopy, and three participant surveys which will be completed at enrollment and remotely.
The total duration of participant participation will be 3-12 months, depending on the timing of the completion of the stool sample and the participant's colonoscopy. The targeted participant timeline is 3 months from enrollment to the completion of a clinical screening colonoscopy. To allow for varying site-specific clinical colonoscopy scheduling delays and COVID delays in scheduling, the duration of time between stool sampling and screening colonoscopy may extend up to 12 months for inclusion of data in the study. However, greater than 3 months duration between stool-based testing and colonoscopy will be considered a protocol deviation.

Institution
MUSC
Recruitment Contact
Zerlinna Teague
8437920965
recruitment@musc.edu

Probing mechanisms of procedural memory transformation with cross-frequency transcranial alternating current stimulation (cf-tACS) as an avenue to sculpt sensorimotor behavior

Date Added
March 7th, 2023
PRO Number
Pro00126392
Researcher
Kirstin-Friederike Heise

List of Studies

Keywords
Aging, Central Nervous System, Healthy Volunteer Studies, Memory Loss
Summary

Sometimes, it is necessary to re-learn a previously learned movement behavior, for example, a bad posture during the golf drive or while playing the piano. Unlearning or relearning an intensively trained behavior is particularly important if the behavior is hampering recovery, for example, in chronic pain or after a stroke. With this study, we experimentally test the brain mechanisms that control the change of pre-existing stable memories of a motor skill with electroencephalography (EEG). We will then use non-invasive brain stimulation to modulate these brain mechanisms and test if it is possible to change the pre-existing motor memory and the learning of a new motor skill.

Institution
MUSC
Recruitment Contact
Valerie Salisbury
843-792-6150
iNRLab@musc.onmicrosoft.com

The Effects of Testosterone Replacement Therapy on the Fundamental Frequencies of Postmenopausal Women.

Date Added
April 11th, 2024
PRO Number
Pro00133858
Researcher
Stephanie Horton

List of Studies

Keywords
Aging, Hormones, Obstetrics and Gynecology, Throat
Summary

The purpose of this study is to measure the effects of hormone replacement therapy (HRT) on the female voice. Female individuals who are receiving hormone replacement therapy, which includes testosterone therapy, will be eligible to participate. We will track the pitch of these individuals' speaking voices during HRT in attempts to see whether HRT, specifically testosterone, can lead to changes in womens' speaking voices. We will be recruiting participants who have already received approx 6-9 months of HRT and compare these to age-matched individuals not receiving HRT. This is a cross-sectional study and we will give participants the option of continued follow-up for 9 more months to assess whether there are longer-term voice changes secondary to HRT. This could provide patients and medical providers with more information regarding the risks/benefits of pursuing hormone replacement therapy.

Institution
MUSC
Recruitment Contact
Stephanie Horton
843-996-6061
hortonst@musc.edu

Perspectives on Treatment with CAB+RPV LA Injectable Therapy from People Living with HIV (PWH) in the US with Prior Adherence Challenges to Oral ART

Date Added
April 12th, 2024
PRO Number
Pro00132072
Researcher
Stephanie Kirk

List of Studies


Keywords
HIV / AIDS
Summary

This is a cross-sectional survey in persons with HIV infection to evaluate experiences of historical oral therapy use and how their perceptions on treatment may have changed with the availability of injectable long-acting therapy. In
addition to surveys, a corresponding retrospective medical chart review will be conducted for each participant.

Institution
MUSC
Recruitment Contact
Alicia Hartley
843-792-4100
hartleal@musc.edu



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