ADPKD patient Christine Mather has become the 2,000th person in Greater Manchester to take part in the 100,000 Genomes Project, which is transforming the diagnosis and treatment of rare diseases.
The DRINK study is looking to recruit patients in the UK with polycystic kidney disease (known as ADPKD or PKD) to take part in a research study to determine how much water to drink. Participants will be randomly assigned to either a daily prescription of high water intake or to continue with their usual drinking practices.
11 January 2016:The Polycystic Kidney Disease (PKD) Charity is delighted that the Scottish Medicines Consortium (SMC) Committee has, after careful consideration of all the evidence, decided to accept tolvaptan (brand name: JINARC®) for routine use by NHS Scotland.
LONDON, 4 September 2015: Hope for families in England and Wales that a treatment option for this incurable condition will be available in the NHS by early 2016.
Below is a summary leaflet explaining the process and results of the Anaesthesia and Perioperative Care Research Setting Prioritisation project. The Top Ten priorities for research were identified. Questions of particular relevance to the PKD Charity are highlighted in bold.
Many thanks to everyone who took part in this project.
5 June 2015
UPDATE, 26 June 2015...Today was the deadline for responding to the NICE Committee. THANK YOU everyone for your support. We will update you after the next Committee meeting on 7 July.
The Polycystic Kidney Disease (PKD) Charity is saddened and deeply disappointed that the National Institute for Health and Care Excellence (NICE) has not recommended tolvaptan within its European marketing authorisation for treating autosomal dominant polycystic kidney disease (ADPKD)[i].
The NICE Appraisal Committee (which met on 1st April) concluded that the relative benefit of tolvaptan compared with placebo (as reported in the TEMPO 3:4 trial) is associated with some uncertainty, and also that tolvaptan is not a cost-effective use of NHS resources.
The report from the 2014 KDIGO Controversies Conference on ADPKD has been published. The Conference was held in Edinburgh on January 17-19, 2014. Drs. Vicente E. Torres (Mayo Clinic, USA) and Olivier Devuyst (University of Zurich, Switzerland) co-chaired this conference.
Tess Harris, CEO PKD Charity, co-chaired a sub-group of patient organisations from UK, France, Germany, Holland, Italy, Japan, Switzerland and the USA, which discussed the patients and carers perspective on ADPKD.
New Survey Names and Shames UK’s ‘Saltiest' Family-Friendly Eateries and Warns of a New Generation of ‘Salt Addicts’
- Children’s meals in ‘family friendly’ eateries STILL contain dangerously high levels of salt - habituating children to the taste of salt.
- Over a quarter of meals surveyed contain 2g or more of salt per meal - that’s the entire maximum recommendation for a whole day for a 1-3 year old – and more salt than 4 packets of crisps!
- Too much salt in childhood puts up blood pressure, which leads to strokes and heart failure
- Call for the maximum recommendation of salt for children to be lowered
Positive result following consultation on changes to dialysis commissioning in England
Thanks to patient power and sensible inputs from nephrologists and GPs, NHS England has delayed making changes to the way that dialysis is commissioned in England - at least until April 2016.
The National BAME (Black, Asian and Minority Ethnic) Transplant Alliance – NBTA - was launched in July 2012. The NBTA’s mission is to bring together “people, passion and resources to address the barriers faced by those from a Black, Asian or Minority Ethnic genetic heritage needing a whole organ or stem cell transplant”.