Langerhanscell-Histiozytosis (LCH) C96.0 C96.5 C96.6
Conditions
Interventions
Group 1: Survey on epidemiological data, clinical presentations, disease progression, follow-up care, and complications associated with the disease. The data are collected prospectively.
Sponsors
Klinik für Kinder-und Jugendmedizin, Schwerpunkt Onkologie, Hämatologie und Hämostaseologie, Universitätsmedizin Frankfurt, Goethe-Universität Frankfurt
Eligibility
Sex/Gender
All
Age
No minimum to 18 Years
Inclusion criteria
Inclusion criteria: The cohort is defined as follows: • Patients with histologically confirmed Langerhans cell histiocytosis (LCH) • Exception: Patients with diabetes insipidus not caused by a germ cell tumor (“strong suspicion of LCH”); this specific patient population may be included in the registry despite the lack of histological confirmation of LCH The following inclusion criteria are defined: • Age 0–18 years • Consent from legal guardians and patients (as appropriate for age) is available
Exclusion criteria
Exclusion criteria: The following exclusion criteria have been defined: • Age >18 years at initial enrollment • No histological confirmation of LCH (exception: diabetes insipidus of unknown cause; see above) • No written informed consent on file
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 1. Age at onset, gender, medical history 2. Mutational status of LCH cells 3. Pattern of disease involvement (monosystemic, multisystemic) 4. Organ manifestation(s) 5. Involvement of high-risk organs (liver, spleen, hematopoietic system) and “special sites” (specific craniofacial bones) 6. Concomitant issues such as hormonal deficiencies, orthopedic problems 7. Treatment(s) | — |
Secondary
| Measure | Time frame |
|---|---|
| Follow-up care: normal findings/recurrence/persistent issues (e.g., hormone replacement therapy) | — |
Countries
Germany
Contacts
Public ContactAnke Barnbrock
Klinik für Kinder-und Jugendmedizin, Schwerpunkt Onkologie, Hämatologie und Hämostaseologie, Universitätsmedizin Frankfurt, Goethe-Universität Frankfurt
Outcome results
None listed