The APS Type 1 (APECED) community is very fortunate to collaborate with the National Institutes of Health (NIH) in Bethesda, Maryland. Since 2012, Dr. Lionakis and his dedicated team of clinicians and researchers have seen more 130 APS Type 1 patients from more than 11 states and 22 countries.
This natural history study, which has enrolled the largest cohort of APS Type 1 patients in the world, has been invaluable to our community in countless ways:
- Further characterizing disease progression
- Shortening time to diagnosis
- Developing new therapeutic approaches
- Collaborating with patients’ local doctors and caregivers
About the Study
Name of Protocol
The Natural History, Immunologic Correlates and Genetic Defects in Patients With Mucocutaneous and Invasive Fungal Infections
National Institute of Allergy and Infectious Diseases (NIAID)
Michail S. Lionakis, M.D.
Clinical Trials Number
Enrollment & Eligibility
For enrollment and eligibility information, please contact:
Tom DiMaggio, R.N., Senior Research Nurse
Specialist Study Coordinator NIH/NIAID/LA
10 Center Drive, Room 11C-207
Bethesda, MD 20892
Elise M Ferre, P.A.-C
Phone: (301) 496-8985
Michail S Lionakis, M.D.
Phone: (301) 443-5089
Patients & Caregivers
For questions about the patient and caregiver experience, please contact us.
Other NIH Studies
For information about other NIH studies, please visit clinicaltrials.gov.