Overview
Staff Clinician
The Lupus Clinical Trials Unit (LCTU) is a part of the National Institute of Arthritis and Musculoskeletal and Skin Disease (NIAMS). NIAMS is an institute of the National Institutes of Health (NIH) that is dedicated to clinical and translational research related to arthritis and musculoskeletal and skin disease.
The LCTU conducts innovative translational and clinical research into the causes, treatment, and prevention of systemic lupus erythematosus (SLE). We maintain a comprehensive clinical database of SLE patients that includes patient demographics, SLE disease activity, damage indices, patient-reported outcome tools, and other data for phenotyping our cohort. The unit's SLE Natural History and Pathogenesis protocol is crucial for understanding the disease's diversity, offering vital biological samples and clinical phenotyping for research. Our collaborative approach has resulted in significant biomarker discoveries and the development of new clinical trials.
We develop and implement clinical research protocols and conduct high impact, innovative clinical research based largely on the discoveries resulting from NIAMS translational research.
How to Prepare for Your Visit
As you prepare to visit the LCTU, there are a few things you’ll need to have ready. Here’s a quick list to help you stay organized.
- Valid, government-issued photo ID (e.g., driver’s license, passport) for those 16 years and older.
- Legal documents (e.g., advance directive/living will, power of attorney, guardianship/custody documents), if applicable.
- List of current medications (name, dosage amounts and frequency).
- Name(s), address(es) and phone number(s) for referring medical professionals to receive information about your visit.
- Extended visitor badge (if you have one).
DO NOT bring valuables, alcohol, marijuana/cannabis, or weapons of any kind.
Refer to the Clinical Center Website for more details on visiting the NIH or use the following resources to assist with planning your visit:
- Download the Patient Handbook (1Mb PDF) for details about your visit and other useful info.
- FollowMyHealth NIH patient portal.
- View this short video on how to get to the NIH.
- Metro information is available at the WMATA website.
- Parking details and schedule of free shuttles on campus and from airports and hotels in the region.
- NIHCC Take Me There - The NIH Clinical Center’s way-finding cellphone app.
The above resources, with more details, are summarized on the Patient Information Sheet (1.1Mb PDF).
Please arrive to the NIH Campus at least 45 minutes prior to your first appointment to allow sufficient time to clear security, park your car and complete patient registration.
NIH is a tobacco-free campus.
Smoking is permitted directly outside the campus; exceptions for patient tobacco use may be discussed with your NIH care provider.
For additional assistance, call
Admissions at 301-496-3141
Questions?
Where is the LCTU located?
We are located inside the NIH Clinical Center, Building 10, Outpatient Clinic 9 (OP9) on the 9th Floor. Instructions for entry into the NIH are below.
Driving
Take the patient entrance located at the intersection of West drive and West Cedar Lane. You will go through a security check. Free parking is available to patients.
Metro Subway
Take the Red Line to “Medical Center” station. The main NIH entrance, Gateway Center, is at the top of the metro escalator. Once you pass through security you can take a shuttle labeled “Campus” to Building 10 North Entrance.
What happens during your visit to the LCTU?
We offer standard clinical care for rheumatic condition(s) as part of our research study. You will not receive any experimental drugs or treatments. If you are eligible, you may receive:
• Evaluation of your rheumatic condition(s).
• Blood tests.
• X-rays.
• Disease monitoring and treatment.
Most patients have blood testing done every 2 to 3 months depending on their condition. This is important to make sure that it is safe to continue taking your prescribed medications.
What if you prefer using a language other than English?
You have the right to receive the services of a medical interpreter in the language of your choice. Staff members of the Community Health Clinic are fluent in Spanish, French, Russian, and Urdu. NIH has professional interpretation services on site.
How do you get a refill on your prescriptions?
Please discuss with your provider regarding medication refills.
How can you view your test results?
You will need to register for an account on the NIH FollowMyHealth Portal. You’ll need an invitation from the Clinical Center to get your account set up. The invitation will be sent to the email address you gave when you registered.
Where can you find more information about your condition?
NIAMS has health information on many rheumatic conditions. There are also condition-specific foundations which offer detailed information and opportunities to connect with other people with the same condition:
Current Projects
Please refer to our clinical trials for details of all current studies.
Quality Improvement
Quality improvement (QI) is a framework used in health care to improve patient care, outcomes, and the development of health care professionals. It has been shown to improve morbidity and mortality. The LCTU has implemented several QI projects for our patient cohort.
- A health maintenance section has been incorporated into all progress notes to address areas affected by SLE and the drugs that treat this disease.
- Patients with lupus are at a higher risk of osteoporosis because of chronic inflammation and the adverse effects of therapeutic medications, including glucocorticoids. We are working with an interdisciplinary team to implement a standardized template for outpatient visits incorporating osteoporosis assessment and management guidelines.
- A specific sun protection brochure to educate patients regarding SLE and photosensitivity.
- Reproductive health is an important topic and should be a shared decision-making process between SLE patients and providers. We are currently working on implementing reproductive health counseling during patient visits.
- Patient-reported outcome surveys are completed at every visit to help clinicians better understand the patient's perceived health status and empower them in their healthcare process.
- A disease indices tool monitors disease activity and damage accrual for every patient visit.
For more information, please contact Jun Chu (Jun.Chu2@nih.gov).
DC Lupus Consortium
Clinical research trials are essential for understanding the pathogenesis of lupus and the development of new therapies. The lupus clinical research team believes that a platform for resource sharing, information exchange, and patient referral is critical in this process. Therefore, in 2016 we established the DC Lupus Consortium (DCLC), a partnership amongst stakeholders in local academia, rheumatologists, nephrologists, patients and patient advocacy groups.
Join Us for the Next DCLC
NIH scientists, researchers, patient advocacy groups, and physicians both within and outside of NIH are welcome to join this consortium. If you would like to learn more about upcoming DCLC events, please contact Elaine Poncio (elaine.poncio@nih.gov) or Isabel Ochoa (ochoai@mail.nih.gov) to be added to the mailing list.
Core Research Facilities
Labs at the NIAMS are supported by the following state-of-the-art facilities and services:
Staff
For specific questions, please refer to the following points of contact
Clinical Research Nurse Specialists
- Elaine Poncio, BSN, RN
- Yenealem Temesgen-Oyelakin, BSN, RN
- Lubna Hooda, BSN, RN
Patient Care Coordinators
- Isabel Ochoa-Navas
- Emily Jones
Nurse Practitioners
- Jun Chu, MSN, CRNP
- Michael Davis, MSN, CRNP
Director, Lupus Clinical Research Program
- Sarfaraz Hasni, MD, MSc
Clinical Trials
Systemic lupus erythematosus (SLE) is a disease that affects females nine times more often than males. People with SLE are often treated with cyclophosphamide (CYC). But CYC can damage a woman s ovaries; it may cause infertility. A drug called GnRHa is sometimes given to protect the ovaries during CYC therapy. But no one really knows how effective GnRHa treatment is. This natural history survey will compare women who received GnRHa during CYC therapy with those who did not.
This protocol will evaluate patients with systemic lupus erythematosus (SLE) and their relatives to learn more about how the disease develops and changes over time. It will also study genetic factors that make a person susceptible to SLE
Scientific Publications
Selected Recent Publications
Key Publications
News & Highlights
Exercise Energizes Patients With Autoimmune Disease
New treatment shows promise in reducing the risk of cardiovascular disease in people with lupus
