CANCELLED – Cystinosis Study Day, Tuesday 19th September

Due to unforeseen circumstances the National Cystinosis Study Day has had to be postponed. The event will hopefully be re-scheduled for Spring 2018. Details will be published here once they are confirmed.

 

A National Cystinosis Study Day will be held on Tuesday 19th September 2017 from 9.30am – 4.30pm at the Post Graduate Centre, Queen Elizabeth Hospital, Birmingham.

Patients and Health Professionals with an interest in Cystinosis are welcome.

To register for a place, please contact Michelle LoweMichelle.lowe@uhb.nhs.uk

Cystinosis Patient Day 2017

Proposed Ethics Amendment for RaDaR

 

The RaDaR Operational Management Board and Rare Disease Group Leads have agreed to apply for an Ethics amendment to clarify the fact that RaDaR consent covers Patient View sign-up, subject to availability at individual renal units.

The proposed amendment will also allow for data linkage to other registries, including the Hospital Episode Statistics (HES) and Office for National Statistics (ONS) databases. This will allow for a far more comprehensive RaDaR data-set than is currently available with manual data entry. It will also allow for longitudinal follow-up of patients who have previously consented to condition-specific research studies, or who do so in the future. 

In addition, it is proposed to ask patients to consent to being contacted directly by a member of the central RaDaR team, regarding information events or further research studies. Such communication would always be approved by the patient’s Consultant before being sent out and will largely be circulated via Patient View.  

Approval will be sought from NHS Digital’s data Access Request Service (DARS). 

It is aimed to submit the Ethics amendment by the of September. Please continue to recruit patients to RaDaR in the meantime, using the current consent documents.

Further details will follow in the coming weeks but we would welcome suggestions over the proposed amendment to Melanie.Dillon@RenalRegistry.nhs.uk.

ADPKD Info Day, 1st July, London

 

Place: Monckton Lecture Theatre, St George’s Hospital, Cranmer Terrace, Tooting, London SW17 0RE
Time: Saturday 1st July 2017, 9:30 am to 4 pm
Hosted by: Dr Joyce Popoola, Dr Anand Saggar and the PKD Charity

  • Learn about ADPKD (Autosomal Dominant PKD) and the latest research
  • Find out more about the new drug, Jinarc (tolvaptan)
  • Put your questions to the experts
  • Meet and share your experiences with others
  • Everyone welcome – patients, families and carers

Lunch and refreshments included. There is no charge, but a donation is welcome to help cover the costs.

Book online at Eventbrite.

ARPKD Family Day, 22nd July, Birmingham

 

The PKD Charity are organising an ARPKD Family Day on Saturday, 22nd July 2017 at Uffculme Centre, Queensbridge Road, Moseley, Birmingham B13 8QY from 10 am – 3pm.

The event will include:

  • Keynote talks about ARPKD from the experts
  • Roundtable discussions between parents, patients, doctors & scientists
  • Supervised entertainment & activities for children and young people at the Marvellous Superstar Summer Party organised by Birmingham Children’s Hospital

Travel bursaries are available.

ARPKD Family Info Day 2017 Flyer

Clinician Educational Meeting on RaDaR & Fabry Disease

 

Prof Detlef Bockenhauer, chair of the Rare Disease Committee of the Renal Association, is hosting a forum to help clinicians and researchers to better understand RaDaR and Fabry Disease in particular. The event will be held during UK Kidney Week on Monday 19th June 2017 at the Pullman Hotel, Kings Dock, Liverpool, L3 4FP

The meeting has been organised by Sanofi Genzyme and will include a buffet dinner.

Places are limited and attendees are asked to RSVP to John Applegate at john@kolcommunications.net

Event Invite

 

RaDaR Update following NHS Cyber Attack

 

In regards to the recent cyber attack on the NHS, we want to reassure you that RaDaR has not been affected and that the patients’ data remains secure.

Neither the RaDaR servers nor North Bristol Trust (where our admin team are based) have been affected by this attack. Although data transfer to Patient View was suspended on Friday, this was just as a precaution in case there were further developments over the weekend.
 
RaDaR is held on a secure N3 server that has been fully security tested and is kept up-to-date with the latest security patches. The UK Renal Registry, who manage the daily operation of RaDaR, has Section 251 approval as an indication of our robust security and information governance policies and practices.

This particular breech was concerned with encrypting information to deny organisations access their files and to cause wide-spread disruption. It was not concerned with stealing patient data.

If you have any concerns about the security of RaDaR you can contact our technical team at:

nbn-tr.radar@nhs.net