On Monday 2nd September 2019 a joint patient and clinician event was held at in London to discuss current and future research around the RaDaR rare disease registry, as well as ways to boost patient engagement in research.
The agenda, a report from the day and pdfs of the presentations can be found below.
RaDaR Meeting Agenda
RaDaR Meeting Report
Current status of RaDaR – Melanie Dillon, RaDaR Operations Officer
Ethics and re-consent – Dr Kate Bramham, Rare Diseases Committee Deputy
ADPKD – Dr Regada El-Damanawi, Research Fellow
NephroS/NURTuRE – Prof Moin Saleem, Paediatric Nephrologist, Bristol
PREDICT – Dr Kate Bramham Rare Diseases Committee Deputy Chair
ERKNet – Tess Harris, PKD Charity
NIHR BioResource – Dr Kathy Stirrups, Head of Sample Management
NCARDRS – Mary Bythell, Head of Rare Disease Registration
NHS Digital – Jackie Shears, Associate Director, Data Acquisitions
Patient Council and information resources – Fiona Loud, Kidney Care Policy Director
Kidney Research UK support – Pete Storey, KRUK Rare Disease Programme Lead
In celebration of World Kidney Day the latest edition of the RaDaR rare disease registry newsletter contains important information about our NIHR Portfolio extension and details of forthcoming patient and clinician information events.
RaDaR Newsletter Spring 2019
The PKD Charity will be hosting the next ADPKD Patient Information Day on Saturday, 30 March 2019 from 10:00am – 16:00pm at Aintree University Hospital Lower Lane, Liverpool. L9 7AL
The event is free to attend and will include talks on:
- The Basics of ADPKD
- Diet and Lifestyle
Lunch and refreshments included
To register please visit Eventbrite or email email@example.com
A new Renal Association Clinical Practice Guideline has been published on Monitoring children and young people with, or at risk of developing Autosomal Dominant Polycystic Kidney Disease (ADPKD), co-written by members of the ADPKD Rare Disease Group
For further details please visit www.renal.org/guidelines
The draft of a new Renal Association Clinical Practice Guideline on Monitoring children and young people with, or at risk of developing Autosomal Dominant Polycystic Kidney Disease (ADPKD) is now available for review.
Please send any comments – listing page/guideline number as appropriate – to Melanie.Dillon@renalregistry.nhs.uk by Wednesday 10th October.
The latest issue of the RaDaR Newsletter contains information about our compliance with the new General Data Protection Regulations (GDPR) and forthcoming events for HNF1B and ADPKD patients.
Place: Frank Lee Centre Hexagon, Addenbrooke’s Hospital, Cambridge, CB2 0SN
Time: Saturday 15th September 2018, 9.30am to 4pm
Hosted by: Professor Fiona Karet and the PKD Charity
Talks and workshops on:
- The Basics of ADPKD
- Genetics and Screening
- Diet and Lifestyle
- New therapies
Registration Information: Online registration https://adpkdseptember2018.eventbrite.co.uk or contact Esther Wright at firstname.lastname@example.org
There is no charge to attend but a donation is always welcome. Refreshments and lunch included.
Cambridge Clinical Trials Unit are looking to recruit patients with Autosomal Dominant Polycystic Kidney Disease (ADPKD) to take part in a research study looking at water intake.
The DRINK Study will randomly assign participants to either a daily prescription of high water intake or to continue with their usual drinking practices.
The aim is to determine whether it is possible and safe for people to drink enough water to stop vasopressin, one of the key hormones that drives cyst growth in PKD. The study also wants to see if participants can measure their own fluid balance, using a simple urine stick test that can be done at home.
If successful, the study will help researchers to design a larger trial to look at whether high water intake can affect long term kidney function.
The researchers also want to include families in the study. If you are interested or have any family members who would be happy to take part, please contact the study team as below for more information:
Telephone: 01223 349 844 E-mail: email@example.com
The latest edition of the RaDaR Newsletter contains important information about re-consenting paediatric patients when they reach the age of 16, as well as details of an upcoming ADPKD patient information day.