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.
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.
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.
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:
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.