Working Group: Langerhans Cell Histiocytosis

Working Group:

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