UK Histiocytosis Advisory Panel

UK Histiocytosis Advisory Panel HLH Adult and Adolescent (For clinicians use only).

Referring a patient

1. Complete the brief form below. Please do not send multiple separate documents per patient.
2. Submit the completed form.
3. Record in the patient’s medical record that they or their parent/guardian agree to their case being discussed at the UK Histio Advisory Panel.
4. The Advisory Panel operates on the basis that its members are part of the Care Team of the patients who are referred and therefore have legitimate access to patient identifiable information including name, date of birth and NHS number.

UKHR – UK Histiocytosis Registry Invite the patient or their parent/guardian to participate in the UK Histiocytosis Registry (UKHR), tick if they agree and provide a contact email for the patient or their parent. Patients who wish to join will be consented remotely by telephone or e-consent by the study team. Alternatively, you may take consent yourself using PIS and consent forms found here: https://www.ukhr.org/consent/ If a HAP number has been issued, please use the HAP number (e.g. 0001) as the Study Number (e.g. UKHR-HAP-0001) on the consent form and email completed forms to sarah.pagan@nhs.net Please do not copy or send the form below to this email address It is only for UKHR use. UKHR is approved for England and Wales REC 18/NE/0374; IRAS 238319. For national and EU service evaluation and audit it is legitimate for the Advisory Panel to provide de-identified information (removal of name, date of birth and NHS number) without specific patient consent. For national, EU and international research, transfer of anonymised information will require consent to join the UKHR which is REC-approved for this purpose.

UK HISTIOCYTOSIS ADVISORY PANEL HLH ADULT & ADOLESCENT (for Clinicians Use Only)

Date of referral (required)

Date of meeting (required)

Patient name (required)
NHS Number (required)
Date of Birth (required)
Age (required)
Gender (required)
Hospital (required)
Referred by (required)
NHS email (required)
HLH Adult or Adolescent

Stage and sites involved
Genetic analysis
Research study
HAP NUMBER*

* HAP number will be provided. Please insert if previously discussed.

Patient/parent agrees to be contacted for the UK Histiocytosis Registry (UKHR).
YesNo

Patient/parent email (required)

Brief history
Please append pathology reports, radiology reports, and key images and attach. Please DO NOT send multiple separate files

Pathology reports
Please add relevant pathology report text. Please DO NOT send multiple separate files

Please provide any images

Local physician/patient opinion
Summary what you would do and any patient preference.
Questions to panel
E.g., What is the diagnosis? What else should be done for staging? What treatment would you recommend?

Summary of recommendation

Other Actions

UK Histiocytosis Advisory Panel HLH Adult and Adolescent (For clinicians use only).

Referring a patient

Your support is vital to ensure that we can continue to deliver our Research and Information Programmes. Thank you.