Joel Moss, MD, PhD
This study is designed to determine the disease processes involved at the level of cells and molecules to develop more effective therapies for LAM. Researchers intend to identify the proteins and genes that contribute to the process of lung destruction in affected individuals.

If you are interested in learning more, please contact:
Tat'Yana Worthy, RN MSN
Research Nurse Specialist, National Institutes of Health
(301)-496-3632 (o)
Tat'Yana Worthy

Study site: Bethesda, MD
Visit https://go.usa.gov/xUuz9 for more details.

National Disease Research Interchange (NDRI) NDRI's Private Donor Program gives individuals and their families an opportunity to provide an invaluable resource for researchers working to discover and advance new treatments or cures. A variety of tissue samples from women with LAM, including lung, kidney, uterus, blood and chyle fluid are currently needed by LAM researchers. If you are having surgery and would be willing to make a tissue donation, or would like to learn more about the tissue donation process, please contact Patient Services at patientservices@thelamfoundation.org or (513) 777-6889.

Joel Moss, MD, PhD, National Institutes of Health
This study is an observational study designed to determine if blood and urine markers after 1 dose and again after 3 months can be used to evaluate the correct dose of sirolimus for people with LAM. Women ages 18-90 with LAM whose doctors have decided they should start taking a 2 mg dose of sirolimus to treat it and who are able to travel to NIH are eligible to participate.

If you are interested in learning more, please contact:
Tat'Yana Worthy, RN MSN
Research Nurse Specialist, National Institutes of Health
(301)-496-3632 (o)
Tat'Yana Worthy, RN MSN

Study site: Bethesda, MD
Visit https://go.usa.gov/xUuz9 for more details.

Angelo M Taveira-DaSilva, MD, National Heart, Lung, and Blood Institute (NHLBI)
LAM is a progressive lung disease that usually strikes women during their childbearing years, usually between the onset of puberty and menopause. Doctors at the National Institutes of Health (NIH) are conducting a research study to compare two methods, albuterol (study drug) given in metered dose inhaler and sprayer, and to determine which of these two methods best improves lung function in women with LAM.

About the Study

• Participants will have a physical exam and medical history
• 3-day overnight stay at our hospital (NIH Clinical Center)
• Participants will take albuterol using a hand held inhaler and nebulizer during their hospital stay

Who can participate?

• Adult women who have impaired lung function because of LAM
  AND
• With no known allergy to albuterol

If you are interested in learning more, please contact:

Tat'Yana Worthy, RN MSN
Research Nurse Specialist, National Institutes of Health
(301)-496-3632 (o)
Tat'Yana Worthy, RN MSN

Study site: Bethesda, MD
Visit https://go.usa.gov/xUuz9 for more details.

Francis X. McCormack, MD at University of Cincinnati Medical Center
The MILED Trial is a new research study designed to answer the question of whether we should be starting sirolimus at low doses earlier in the course of disease, before symptoms develop and while lung function is still normal, similar to the manner in which we treat diabetes and high blood pressure early to prevent future heart and kidney complications.

Learn more about the MILED Trial at https://thelamfoundation.org/MILED.

You may be eligible if you:

• Are an adult woman with LAM
• Have an FEV1 greater than 70% predicted
• Are not currently taking sirolimus

During the study, participants will:

• Attend 8 study visits over 2 years (about one visit every 4 months)
• Complete blood tests, a physical exam, and pulmonary function tests at visits
• Answer questions about breathing, fatigue and quality of life
• Take one pill every day (1 mg sirolimus or a sugar pill) throughout the study
• Record their pill taking and any side effects in an electronic diary

Participants will receive:

• Physical exams, pulmonary function tests, a chest x-ray, and laboratory tests free of charge
• Study drug (either 1 mg sirolimus or placebo) throughout the study
• Reimbursement for travel expenses to attend each study visit

To get more information or to see if you may be eligible, please contact Susan McMahan Sellers, BSN, RN, or Carrie L. Keininger, BSN, RN. We can answer your questions, provide additional information, and refer you to the closest MILED study site.

Susan’s contact information is susan.mcmahan@uc.edu | 513-558-4376

Carrie's contact information is keinincl@ucmail.uc.edu | 513-558-5602

Sites that are welcoming new participants are located in Atlanta, Chicago, Cincinnati, Seattle, and New York City.

Francis X. McCormack, MD at University of Cincinnati
The MIDAS trial continues to recruit patients eager to contribute to LAM research. This study aims to follow patients with LAM over at least two years by collecting information from their regular clinic visits with their LAM clinic provider. Almost all LAM patients can participate and adult women with TSC are eligible, whether lung cysts are present are not. There are currently 20 participating LAM clinics and over 400 patients currently enrolled.

To get more information or to see if you may be eligible, please contact Susan McMahan Sellers, BSN, RN, or Carrie L. Keininger, BSN, RN. We can answer your questions, provide additional information, and refer you to the closest study site.

Susan’s contact information is susan.mcmahan@uc.edu | 513-558-4376

Carrie's contact information is keinincl@ucmail.uc.edu | 513-558-5602

Study sites: Cleveland Clinic Foundation, Emory University, Harvard/BWH, Loyola University Chicago, Mayo Clinic, Jacksonville and Rochester MN, MUSC, National Jewish Health, OHSU, Stanford University, Swedish, University of Cincinnati, University of Michigan, University of Pennsylvania, University of Rochester, University of Utah, University of Texas Health Center, University Texas SW, Vanderbilt University, and Washington University.
Visit https://clinicaltrials.gov/ct2/show/NCT02432560?cond=MIDAS&rank=10 for more details.