Downloadable Documents
Click on a link to download the file.
1. UKHR Participant Information Leaflet
- For adults with histiocytosis (WORD document: 172kB)
- For teenagers aged 11-15 years with histiocytosis (WORD document: 1.07MB)
- For children aged 6-10 years with histiocytosis (WORD document: 303kB)
- For young children aged 0-6 years with histiocytosis (WORD document: 196kB)
- For parents or guardians of children with histiocytosis (WORD document: 167kB)
- For relatives of deceased patients with histiocytosis (WORD document: 166kB)
2. Information on Partner Registries
- Erdheim-Chester Disease Global Alliance Registry (WORD document: 301kB)
- Registry for Histiocytic Disorders (WORD document: 263kB)
- International Rare Histiocytic Disorder Registry (WORD document: 303kB)
3. UKHR Consent Form
- Consent for adult with histiocytosis (WORD document: 158kB)
- Assent for child with histiocytosis (WORD document: 156kB)
- Consent for parent or guardian of child with histiocytosis (WORD document: 159kB)
- Consent for relative of deceased patient with histiocytosis (WORD document: 159kB)
4. Invitation Letter
- Invitation for adults with histiocytosis (WORD document: 149kB)
- Invitation for parents or guardians of children with histiocytosis (WORD document: 155kB)
- Invitation for relatives of deceased patients with histiocytosis (WORD document: 156kB)
5. Reply Slip
- To be enclosed with the invitation letter (WORD document: 148kB)
6. Withdrawal Slip
- For people who wish to withdraw from the registry (WORD document: 167kB)
7. Application Form
- To use UKHR data and samples (WORD document: 156kB)
8. List of Scientific Research Using UKHR data or samples
Will be available here once projects start being approved.