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 email@example.com
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: firstname.lastname@example.org
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.
The PKD Charity is organising an information and support day for patients and families with Autosomal Dominant Polycystic Kidney Disease (ADPKD). The event will be held at Engineers’ House, Bristol BS8 3NB on Saturday 11 March 2017 from 9.30 – 4pm.
Attendance is free with lunch and refreshments provided but please register online to book your place.