Rare Disease Group
The Retroperitoneal Fibrosis (RPF) Rare Disease Group aims to:
- establish a registry of patient data and biological samples (plasma, urine, biopsy tissue)
- collate available information on RPF and develop new information for both patients and carers
- improve upon observational data in terms of the presentation, natural history and outcomes in RPF patients nationally
- develop multi‐disciplinary consensus care pathways and clinical guidelines for RPF
- develop a strategy for patient recruitment to trials
In March 2019 a Public and Patient Involvement event was held with patients and their carers from the UK and live streaming internationally.
The RPF Rare Disease Group conducted a patient focused online study to understand the un-met medical need of patients with retroperitoneal fibrosis. All entries were anonymous. The results of the survey were presented at UK Kidney Week 2017.
UK Kidney Week 2017 RPF Patient Survey Poster – James Tomlinson et al, Clinical Lecturer in Renal Medicine, Institute of Clinical Sciences, Imperial College, London
The RPF Rare Disease Group Lead Dr Fred Tam has been invited to join the patient-led international community group Retroperitoneal Fibrosis World Support Group.
The RDG plans to collaborate with the international patient community through questionnaire‐based research on the symptoms, management and impact of RPF on the patient community.
A UK Retroperitoneal Fibrosis Patient Support Group is currently being established.
Publications
UK Kidney Week 2017 RPF Case Studies Poster – James Tomlinson et al, Clinical Lecturer in Renal Medicine, Institute of Clinical Sciences, Imperial College, London
UK Kidney Week 2017 RPF Patient Survey Poster – James Tomlinson et al, Clinical Lecturer in Renal Medicine, Institute of Clinical Sciences, Imperial College, London
Reports
- Dr Jonathan Barratt, Consultant Nephrologist, Leicester General Hospital
- Dr Richard Baines, Consultant Nephrologist, Leicester General Hospital
- Dr Tara Barwick, Consultant in Nuclear Medicine, Hammersmith Hospital, London
- Dr Ron Cairns, Consultant Nephrologist, Hammersmith Hospital, London
- Dr Maresa Carulli, Consultant Rheumatologist, Imperial College London
- Dr David d’Cruz, Consultant Rheumatologist, Guy’s Hospital, London
- Mr Gamal El Wardany, Patient Representative
- Ms Archie Fernando, Consultant Urological Surgeon, Guy’s and St Thomas’ NHS Foundation Trust
- Professor Donald Fraser, Consultant Nephrologist, Cardiff University School of Medicine
- Ms Norma Gibbons, Consultant Urologist, Charing Cross Hospital, London
- Dr Shahir Hamdulay, Consultant Rheumatologist, Northwick Park Hospital
- Dr Catherine Horsfield, Consultant Pathologist, Guy’s and St Thomas’ NHS Foundation Trust
- Mr David Hrouda, Consultant Urologist, Charing Cross Hospital, London
- Mr Michael Jenkins, Consultant Vascular Surgeon, St Mary’s Hospital, London
- Dr Konstantinos Katsanos, Consultant Radiologist, St Thomas’ Hospital, London
- Dr Anne Kinderlerer, Consultant Rheumatologist, Imperial College London
- Dr William McKane, Consultant Nephrologist, Northern General Hospital, Sheffield
- Mr Tim O’Brien, Consultant Urologist, Guy’s Hospital, London
- Mr Jake Patterson, Consultant Urological Surgeon, Royal Hallamshire Hospital, Sheffield
- Dr James Pattison, Consultant Nephrologist, Guy’s Hospital, London
- Putnam Morgan, Patient Representative
- Professor Charles Pusey, Consultant Nephrologist, Imperial College London
- Prof Fred Tam, Consultant Nephrologist Imperial College London, RDG Lead
- Dr James Tomlinson, Renal Clinical Lecturer, Imperial College London
Fred Tam is the chief investigator of the randomized controlled trial of Syk inhibitor in IgA nephropathy. He has received research project grants from AstraZeneca Limited, Baxter Bioscience, Boehringer Ingelheim Limited and GSK, and has consultancy agreements with Baxter Bioscience, MedImmune and Rigel Pharmaceuticals.
