(281) 713-2962
800 Rockmead Drive, Suite 155
Kingwood, TX 77339
[email protected]
Foundation for Sarcoidosis Research Advanced Cures Registry (FSR-SARC Registry)
Status: Recruiting
Location: Foundation for Sarcoidosis Research
Conditions: Foundation for Sarcoidosis Research
City/State:
Chicago, Illinois
Contact Information:
Leslie Serhuck, MD MA Mbioethics
312-341-0500
[email protected]
Tricha Shivas, MBe
312-341-0500
[email protected]
Brief Summary:
The goal of the study is to create a longitudinal study of patient reported outcomes for people living with sarcoidosis that maintains privacy. Patients report on the following: demographics, disease symptoms, diagnostic journey, provider experience, disease treatment, and burden of disease. The goal is to create a natural history of sarcoidosis, support research, and better understand the needs of the sarcoidosis community.
Detailed Description:
Participants review a document, Understanding Your Participation, and check boxes on the Participant Informed Consent document that confirms they understand the risks/benefits of participation (or Assent if the patient is a minor age 7-18), they create an online account, and then are asked to complete the baseline survey questionnaire. Participants confirm they understand that their participation is completely voluntary, that their identifying information will be secured and encrypted, their private health information will be stored separately in a secure database. Their private information will never be shared with other people, unless its required by law. The registry may share de-identified information with researchers and other databases. Their personal information will be protected and not shared. They may choose to stop their participation at any time by contacting FSR. They are not required to fill out all the questions and can leave any unanswered. They will be contacted by the registry once a year to update or correct their health information. They can choose to be contacted by FSR if a study becomes available that they may wish to know more about.
Role of Endomyocardial Biopsy and Etiology-based Treatment in Patients With Inflammatory Heart Disease in Arrhythmic and Non-arrhythmic Clinical Presentations: an Integrated Approach for the Optimal Diagnostic and Therapeutic Management
Status: Recruiting
Location: IRCCS San Raffaele Scientific Institute
Conditions: IRCCS San Raffaele Scientific Institute
City/State:
Milan, Italy
Contact Information:
Giovanni Peretto, MD
+39 (022) 643-7482
[email protected]
Brief Summary:
this multicenter registry, both retrospective and prospective, aims at answering multiple questions about myocarditis, with special attention to arrhythmic manifestations. Patients with myocarditis proven at least by endomyocardial biopsy and/or cardiac magnetic resonance will be enrolled, and characterized by means of multimodality diagnostic workup, both at baseline and during follow-up. The following unsolved questions will be addressed:
-to report the prevalence of arrhythmias in myocarditis
-to describe the relationships between arrhythmia features and myocardial inflammatory status
-to identify predictors of sudden cardiac death in acute myocarditis and chronic inflammatory cardiomyopathy with arrhythmic vs. non-arrhythmic clinical onset
-to investigate safety and effectiveness of immunomodulatory treatment strategies in arrhythmic and non-arrhythmic myocarditis
-to investigate safety and effectiveness of catheter ablation ablation to target myocarditis-associated arrhythmias
-to describe clinical presentation and arrhythmic outcomes of genetic forms of myocarditis
-to describe clinical presentation and arrhythmic outcomes of myocarditis associated with systemic rheumatologic diseases
Role of Novel ILR in the Management of PVCs
Status: Recruiting
Location: Centerpoint Medical Center, Kansas City Heart Rhythm Institute, Overland Park Regional Medical Center, Research Medical Center Clinic
Conditions: Centerpoint Medical Center, Kansas City Heart Rhythm Institute, Overland Park Regional Medical Center, Research Medical Center Clinic
City/State:
Overland Park, Kansas
Independence, Missouri
Kansas City, Missouri
Contact Information:
Donita Atkins
816-651-1969
[email protected]
Brief Summary:
This prospective, observational study is a single center clinical registry of patients referred for management of symptomatic or asymptomatic Premature Ventricular Contractions (PVCs). Subjects will be followed through 12 months. The study will enroll approximately 50 patients.
Detailed Description:
This study is intended to monitor patients presenting with Premature Ventricular Contractions (PVCs) and ventricular arrhythmias using implantable loop recorders (ILRs) from the time of their initial presentation of PVCs to assess for the incidence of all cardiac arrhythmias detected with long term monitoring in this population. It is also intended to evaluate for clinical, biomarker and radiological evidence of myocarditis in this cohort to understand association with incident arrhythmias and understand the role of implantable loop recorders (ILRs)in managing these patients.
Rheumatology Patient Registry and Biorepository
Status: Recruiting
Location: Yale-New Haven Hospital
Conditions: Yale-New Haven Hospital
City/State:
New Haven, Connecticut
Contact Information:
Nicolas Page
203-737-5571
[email protected]
Brief Summary:
To facilitate clinical, basic science, and translational research projects involving the study of rheumatic diseases.
Detailed Description:
A rheumatology biorepository will be created to permit comparative analyses between the rheumatic diseases in order to increase the understanding of disease pathogenesis. Patients seen at Yale clinics diagnosed with rheumatic diseases are invited to participate in this study. These rheumatic diseases include, but are not limited to: adult onset Still’s disease, ankylosing spondylitis, psoriatic arthritis, reactive arthritis, antiphospholipid syndrome, systemic lupus erythematosus, Behcet’s disease, dermatomyositis, polymyositis, giant cell arteritis and other vasculitides, Lyme’s disease, mixed connective tissue disease, polymyalgia rheumatica, rheumatoid arthritis, sarcoidosis, systemic sclerosis (scleroderma), Sjogren’s syndrome, and undifferentiated connective tissue disease.
A Study to Evaluate the Efficacy, Safety, and Tolerability of BMS-986278 in Participants With Progressive Pulmonary Fibrosis
Status: Recruiting
Location: Stanford Hospital and Clinics, University Hospitals Cleveland Medical Center
Conditions: Stanford Hospital and Clinics, University Hospitals Cleveland Medical Center
City/State:
Stanford, California
Cleveland, Ohio
Contact Information:
BMS Study Connect Contact Center www.BMSStudyConnect.com
855-907-3286
[email protected]
Brief Summary:
The purpose of this study is to evaluate the efficacy, safety, and tolerability of BMS-986278 in Participants with Progressive Pulmonary Fibrosis.
Interstitial Lung Disease Research Unit Biobank
Status: Recruiting
Location: University of Kansas Medical Center
Conditions: University of Kansas Medical Center
City/State:
Kansas City, Kansas
Contact Information:
Kimberly Lovell, Ph.D.
913-588-6067
[email protected]
Brief Summary:
Establish a interstitial lung disease (ILD) registry and biorepository to lead towards a further understanding of the disease.
Detailed Description:
The University of Kansas ILD and Rare Lung Disease clinic sees hundreds of new patients per year. The investigators would like to leverage this resource to develop an Interstitial Lung Disease Research Unit (ILDRU) repository and database to help develop new methods for early diagnosis, uncover underlying genetic and environmental risk factors, as well as potential treatment targets in the broad range of interstitial lung diseases and rare lung diseases (RLD).
A Study of the Natural Progression of Interstitial Lung Disease
Status: Recruiting
Location: University of Chicago
Conditions: University of Chicago
City/State:
Chicago, Illinois
Contact Information:
Spring Maleckar
773-834-4053
Brief Summary:
We propose to acquire data and blood samples on all patients being cared for by the Interstitial Lung Disease (ILD) program. Additionally, we will collect data and blood samples from a control group for comparator purposes. In doing so, we will be able to describe the “phenotypic” expression of these diseases.
Role of Genetic Factors in the Development of Lung Disease
Status: Recruiting
Location: National Institute of Health Clinical Center
Conditions: National Institute of Health Clinical Center
City/State:
Bethesda, Maryland
Contact Information:
Tatyana Worthy, R.N.
(301) 827-1376
[email protected]
Joel Moss, M.D.
(301) 496-1597
[email protected]
Brief Summary:
This study is designed to evaluate the genetics involved in the development of lung disease by surveying genes involved in the process of breathing and examining the genes in lung cells of patients with lung disease.
The study will focus on defining the distribution of abnormal genes responsible for processes directly involved in different diseases affecting the lungs of patients and healthy volunteers.
Optional CT Sub-study
The standard CT scan will be compared to the low dose radiation CT scan for the 150 subjects enrolled in the sub-study to assess the variation between the two techniques. Specifically, the quantitative computer aided detection of lung CT abnormalities from LAM can be compared to assess whether low radiation dose CT exams is an alternative to conventional CT to monitor disease status.
This optional sub-study will be offered to up to 100 adult subjects with lung disease and up to 50 children age 9 and older with CF. Children will not be enrolled in the optional CT sub-study unless they have had a standard CT scan for medical purposes to use in comparison. One additional low dose radiation CT scan of the chest may be done as part of this sub-study when these subjects have their next annual CT scan.
This study is designed to evaluate genetic mechanisms of lung disease by surveying polymorphic genes involved in respiratory function and examining gene expression in the lung cells of individuals with pulmonary disease (e.g., alpha 1-antitrypsin deficiency, asthma, chronic obstructive pulmonary disease, cystic fibrosis, sarcoidosis, history of infection, and genetic mutations consistent with lung pathology). Emphasis will be on defining the distribution of allelic variants of nitric oxide synthase, alpha 1-antitrypsin, and the cystic fibrosis transmembrane conductance regulator genes in patients and in age- and sex-matched healthy individuals in a control population.
Inhaled Treprostinil in Sarcoidosis Patients With Pulmonary Hypertension
Status: Recruiting
Location: University of Florida
Conditions: University of Florida
City/State:
Gainesville, Florida
Contact Information:
Christina M Eagan, DNP
352-273-8990
[email protected]
Name: Ali Ataya, RN
Phone Number: 352-273-8740
Email: [email protected]
Brief Summary:
This study aims to evaluate the efficacy and safety of inhaled treprostinil in subjects with sarcoidosis-associated interstitial lung disease and pulmonary hypertension.
Detailed Description:
Pulmonary sarcoidosis-associated pulmonary hypertension is classified as WHO Group 5 pulmonary hypertension and may occur in anywhere from 5-20% of sarcoidosis patients. Inhaled treprostinil has shown clinical improvements in exercise capacity after 12 weeks of therapy in patients with WHO Group 1 pulmonary hypertension. More recently, there has been interest in using inhaled PAH-specific therapies for the treatment of pulmonary hypertension associated with interstitial lung disease.
The investigators believe that those patients with pulmonary hypertension in the setting of sarcoidosis-associated interstitial lung disease are a unique population which may potentially benefit from inhaled, targeted pulmonary arterial hypertension therapy (inhaled treprostinil) while minimizing the adverse effects associated with systemic pulmonary vasodilators. This study aims to evaluate the efficacy and safety of inhaled treprostinil in subjects with sarcoidosis-associated interstitial lung disease and pulmonary hypertension.
Diagnostic Yield of Intranodal Forceps Biopsies in Mediastinal Adenopathy
Status: Recruiting
Location: The George Washington University Hospital
Conditions: The George Washington University Hospital
City/State:
Washington D.C.
Contact Information:
Khalil Diab, MD
2027412180
[email protected]
Benjamin Delprete, DO
2027412180
[email protected]
Brief Summary:
The investigators will compare endobronchial ultrasound transbronchial needle aspiration (EBUS-TBNA) with intranodal forceps biopsy (EBUS-IFB) as it relates to the rate of diagnosis of suspected sarcoidosis.
Detailed Description:
This is prospective, single center randomized comparative study to determine the diagnostic yield and specimen quality of endobronchial ultrasound guided intranodal forceps biopsy of patients with suspected sarcoidosis based solely on imaging. This will be a single group study and will compare transbronchial needle aspiration via 19 or 21-gauge needle with intranodal forceps biopsy.
The study aims to answer a knowledge gap a as to whether the diagnostic yield and specimen quality of EBUS-TBNA with a 19G needle is less than those obtained by 1.9mm or greater intranodal forceps biopsy. The study proposed here will add to the field by further elucidating whether this procedure is beneficial for the diagnosis as it pertains to suspected sarcoidosis.
The anticipated required enrollment is 55 patients to achieve an α of 0.05 and β of 0.2. This assumes an unassisted diagnostic yield of 62.5% with standard of care EBUS-TBNA as reported in Ray et al, and a diagnostic supplementation to 80% yield with intranodal forceps biopsies.