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
The NIH’s Elise FerrĂ© with Dr. Mukil Natarajan from the FDA at our 2019 Symposium.
L-R: Dr. Mihalis Lionakis (NIH), Dr. Dana Orange (Rockefeller), Jennifer Orange (Board Member), Dr. Gregory Constantine (NIH), Dr. Mukil Natarajan (FDA)

About the Study


Name of Protocol

The Natural History, Immunologic Correlates and Genetic Defects in Patients With Mucocutaneous and Invasive Fungal Infections

Sponsor

National Institute of Allergy and Infectious Diseases (NIAID)

Primary Investigator

Michail S. Lionakis, M.D.

Protocol Details

clinicalstudies.info.nih.gov

Clinical Trials Number

NCT01386437

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
E-mail: thomas.dimaggio@nih.gov
Phone: 301-443-8341
Fax: 301-480-3783

Elise M Ferre, P.A.-C
Email: elise.ferre@nih.gov    
Phone: (301) 496-8985

Michail S Lionakis, M.D.
Email: lionakism@mail.nih.gov        
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.