Langerhans Cell Histiocytosis
Objective
Developing an international adult dataset in Langerhans Cell Histiocytosis (LCH) with a special interest in bone and pituitary lesions.
Summary
LCH is a form of blood cancer that is characterized by proliferation and accumulation of immune cells called Langerhans cells. It can affect almost any organ with bones, lungs, skin, and pituitary being the most frequent sites of involvement among adults. Each patient is affected differently and, as there is no definite cure of the disease, several treatment options exist ranging from watchful waiting to chemotherapy and medications targeting specific mutations. There is a still unmet need for an international platform that will help gather information for the course of the disease among adults over time (especially for the specific sites of bones and pituitary) as well as the effectiveness and safety of drugs used in these patients.
Working Group Members
Name(s) | Expertise / Role | Organisation |
---|---|---|
Lead: Polyzois Makras | endocrinologist, LCH expert | 251 Hellenic Air Force Hospital – LCH Adult Clinic, Greece/ EuroBloodNet member |
Natasha Appelman-Dijkstra | internist-endocrinologist, Bone expert | Leiden University Medical Center, the Netherlands |
Socrates Papapoulos | endocrinologist, Bone expert | Leiden University Medical Center, the Netherlands and 251 Hellenic Air Force Hospital, Greece |
Maria Yavropoulou | endocrinologist, Bone expert | Laiko General Hospital of Athens, Greece |
Antonis Kattamis | pediatric Hematology/Oncology | Aghia Sophia Children’s Hospital and National & Kapodistrian University of Athens, Greece / EuroBloodNet member |
Jan van Laar | immunologist, LCH expert | Erasmus Medical Center Rotterdam, The Netherlands |
Daniel El Fassi | hematologist | Copenhagen University Hospital, Denmark / EuroBloodNet member |
patient representatives | Histiocytosis Hellas Patients’ Association, Greece | |
Marina Kouveletsou | internist | 251 Hellenic Air Force Hospital – LCH Adult Clinic, Greece |
Danae Georgakopoulou | trainee, data manager | 251 Hellenic Air Force Hospital – LCH Adult Clinic, Greece |