Rare Disease Group

  • To develop the ADPKD RaDaR registry
  • To develop best practice guidelines in regards to the treatment of ADPKD
  • To provide better patient information and support
  • To develop international collaborations to enable the above aims
  • To support research, in collaboration with international groups, into basic science, disease progression models and clinical trials

Regular information events are held throughout the year.

Previous events have been held in Cambridge (2018), London (July 2017), Bristol (March 2017), Salford (November 2016), Sheffield (September 2016) and Birmingham (January 2016). Clinical members of the ADPKD Rare Disease Group attend and talk at these events.

Grants

Funder: Otsuka/KRUK

Title of project: ANCHOR – ‘ADPKD Nested CoHort in RaDaR

Principal Investigator(s):

Dr Catriona Shaw/Dr Elham Asgari

Dr Daniel Gale

Dr Grahame Wood

Professor Albert Ong

Amount: £65,000

The ADPKD RDG has links (shared members) with other international collaborative groups including Kidney Disease: Improving Global Outcomes (KDIGO), EUROCYST, The European ADPKD Forum (EAF), the Critical Path Institute’s (CPATH) PKD Outcome Consortium and the Standardised Outcomes in Nephrology Group (SONG).

The ADPKD RDG works closely with the PKD Charity, led by Tess Harris.

The RDG is also working with partner organisations such as PKD International, The European ADPKD Forum, the Ciliopathy Alliance and FEDERG (European Federation of Inherited and Rare Renal Patient Groups). These groups have considerable experience in empowering and informing ADPKD families.

ADPKD RDG Annual Report 2018 – 2019

RDG Lead(s)
  • Dr Roslyn Simms, Clinical Research Fellow, Newcastle University RDG Lead
Patient representative(s)
Other members
  • Dr Coralie Bingham, Adult Nephrologist, Exeter
  • Dr Detlef Bockenhauer, Great Ormond St Hospital, London
  • Mrs Sarah Borrows, Queen Elizabeth Hospital, Birmingham
  • Professor Simon de Lusignan, Primary Care & Clinical Informatics Research Group, Surrey
  • Dr Filipa Ferreira, Primary Care & Clinical Informatics Research Group, Surrey
  • Dr Daniel Gale, Clinical Lecturer in Nephrology, London
  • Dr Will Herrington, Oxford Clinical Trials Service Unit
  • Dr Kate Hillman, Adult Nephrologist, Manchester Royal Infirmary
  • Mr Nick Inston, Renal Surgeon, Queen Elizabeth Hospital Birmingham
  • Dr Larissa Kerecuk, Paediatric Nephrologist, Birmingham
  • Professor Albert Ong, Adult Nephrologist, Eurocyst Study Lead, Sheffield Kidney Institute
  • Dr Anand Saggar, Clinical Geneticist, St George’s Hospital
  • Mr David Van Dellen, Renal Transplant Surgeon, Central Manchester University Hospitals
  • Dr Jeremy van Vlymen, Primary Care & Clinical Informatics Research Group, Surrey
  • Richard Sandford, University Reader in Renal Genetics, Addenbrooke’s Hospital
  • Dr John Sayer, Institute of Genetic Medicine, Newcastle University
  • Patricia Wilson, Professor of Medicine, London
  • David Wheeler, Adult Nephrologist, KDIGO Chairperson, UCL Centre for Nephrology Royal Free, London
  • Professor Paul Winyard, Head of the Nephro-Urology Research Unit, ICH
  • Dr Graham Wood, Adult Nephrologist, Salford Royal NHS Foundation Trust

None stated