MGRS – RDG

  • Aims of the group
    • To promote the RaDaR registration of patients affected by Monoclonal Gammopathy of Renal Significance (MGRS)
    • To develop standard operating procedures in regards to the treatment of Paraprotein Associated Kidney Diseases
    • To provide better patient information and support
    • To support research, in collaboration with international groups, into basic science, disease progression models and clinical trials
  • Current Activities

    As the group is newly formed the first priority will be to promote RaDaR recruitment.

  • International Links

    The MGRS RDG has links (shared members) with other international collaborative groups including:

     

    • UKAN – UK Amyloidosis Network. This is a group run through the UK National Amyloidosis centre with a yearly meeting open to all. Physicians with an interest in amyloidosis can be identified through this forum and develop closer links to the national referral centre.
  • Patient Support Groups

    More information for patients diagnosed with AL amyloidosis can be found through the National Amyloidosis Centre UK NAC: www.amyloidosis.org.uk/

    For patients with light chain cast nephropathy or other MGRS conditions see the following link to Myeloma UK support groups: www.myeloma.org.uk/help-and-support/support-groups

     

     

     

  • Reports

    The MGRS Rare Disease Group is newly established. Their first report will be due in Spring 2019.

  • Group Members
    • Dr Rawya Charif, Renal Department, Hammersmith Hospital, London
    • Prof Paul Cockwell, Renal Department, Queen Elizabeth Hospital, Birmingham
    • Dr Mark Cook, Department of Clinical Haematology, Queen Elizabeth Hospital, Birmingham
    • Prof Mark Drayson, Clinical Immunology Service, Medical School, University of Birmingham
    • Dr Neill Duncan, Nephrology Department – Renal and Transplant, North West London
    • Dr Julian Gillmore UK National Amyloidosis Centre, London
    • Dr Helen Lackmann, UK National Amyloidosis Centre, London
    • Charlotte Meredith – Patient Representative
    • Dr Desley Neil, Department of Cellular Pathology,Queen Elizabeth Hospital, Birmingham
    • Dr Jennifer Pinney, Renal Department, Queen Elizabeth Hospital, Birmingham RDG Lead
    • Dr Guy Pratt, Department of Clinical Haematology,Queen Elizabeth Hospital, Birmingham
    • Dr Candice Roufosse, Pathology Department – Renal and Transplant, North West London
    • Dr Ashutosh Wechalekar, UK National Amyloidosis Centre, London
  • Disclosure of Conflicts of Interest

    Jennifer Pinney and Guy Pratt (with support from Mark Cook and Paul Cockwell) have developed a specialist para-protein clinic in the centre for rare diseases (CfRD) at the Institute of Translational Medicine at the Queen Elizabeth Hospital, Birmingham.

MGRS Patient Information Version 1 Updated June 2018
Written by the MGRS Rare Disease Group