Meeting time : 3pm via TEAMS 2^nd and 4^th Friday of the month

https://teams.microsoft.com/l/meetup-join/19%3ameeting_YjE5MWIxMGUtY2U3Zi00OTIyLWEyNTMtMmE1OGY0ZGY4Njdm%40thread.v2/0?context=%7b%22Tid%22%3a%2237c354b2-85b0-47f5-b222-07b48d774ee3%22%2c%22Oid%22%3a%22c2dd0fa9-7348-48ac-8393-1970dd7584c2%22%7d

 The meeting usually lasts 1-2 hours and reviews up to 6 cases often children followed by adults.

Presenting a patient

1. Complete the brief proforma available here (click File, Download, select .docx)
   
   Histiocytosis-Advisory-Panel-2023.docx

   Please copy information into the form if possible. If Word will not allow pasting then one additional Power point is acceptable. Please do not send multiple separate documents per patient.

2. Email the completed form to nuth.histiocytosis@nhs.net
3. Record in the patient’s medical record that they agree to their case being discussed at the Advisory Panel.
4. A HAP number will be provided in the outcome form. Please insert the HAP number if the patient has been previously discussed.
5. Invite the patient or their parent 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/
6.  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 send the proforma to this address. UKHR is approved for England and Wales REC 18/NE/0374; IRAS 238319.
7. 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.
8. 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.
9. For national, EU and international research, transfer of anonymised information will require consent to join the UKHR which is REC-approved for this purpose.

***Email the completed form to nuth.histiocytosis@nhs.net