The Renal Association have published a new Clinical Practice Guideline on Pregnancy and Renal Disease, written by members of the RaDaR Rare Disease Group.
On Monday 2nd September 2019 a joint patient and clinician event was held at in London to discuss current and future research around the RaDaR rare disease registry, as well as ways to boost patient engagement in research.
The agenda, a report from the day and pdfs of the presentations can be found below.
Current status of RaDaR – Melanie Dillon, RaDaR Operations Officer
Ethics and re-consent – Dr Kate Bramham, Rare Diseases Committee Deputy
ADPKD – Dr Regada El-Damanawi, Research Fellow
NephroS/NURTuRE – Prof Moin Saleem, Paediatric Nephrologist, Bristol
PREDICT – Dr Kate Bramham Rare Diseases Committee Deputy Chair
ERKNet – Tess Harris, PKD Charity
NIHR BioResource – Dr Kathy Stirrups, Head of Sample Management
NCARDRS – Mary Bythell, Head of Rare Disease Registration
NHS Digital – Jackie Shears, Associate Director, Data Acquisitions
Patient Council and information resources – Fiona Loud, Kidney Care Policy Director
Kidney Research UK support – Pete Storey, KRUK Rare Disease Programme Lead
The draft of the Renal Association’s Clinical Practice Guideline on Pregnancy and Renal Disease is now available for review.
Please send any comments in the body of an email or as a text document, referring to the guideline/page/line in question (not as tracked changes) to Melanie.Dillon@renalregistry.nhs.uk by Friday 28th June.
We would like your feedback on the first UK guideline on renal disease in pregnancy, which has been commissioned by the UK Renal Association. The aim of the guideline is to improve and standardise the care of women with CKD who are planning a pregnancy, pregnant, or in the postpartum period.
The guideline has 97 statements that address the care of women with CKD prior to, during, and following pregnancy. These statements are divided in sections including structure of care, medication, pre-pregnancy and pregnancy care, renal transplantation, dialysis, lupus, diabetes and congenital abnormalities of the kidney and urinary tract.
Via this survey (www.surveymonkey.co.uk/r/PregnancyCKD) your comments will inform the on going development of the guideline prior to publication in 2019.
The survey is open to both patients and clinicians.
We would be grateful for your participation by Friday 14th December.
If you have any queries, please contact firstname.lastname@example.org
With many thanks,
Kate Wiles (on behalf of the Pregnancy and Renal Disease Guideline Group)
NIHR Doctoral Research Fellow in Obstetric Nephrology
King’s College London
The Renal Association’s Patient Information Sub-committee aims to develop and maintain a high quality patient information resource for use by kidney doctors, patients, families and carers in the UK. The work is carried out in partnership with Kidney Care UK
The first round of leaflets have now been published on the RA website. This includes a leaflet on Pregnancy and Chronic Kidney Disease to tie in with 2018’s World Kidney Day theme of Kidney Disease and Women’s Health and written by the Pregnancy and CKD Rare Disease Group.
The Pregnancy and CKD Rare Disease Group have produced some new guidelines, following updated advice from the EMA regarding mycophenolate and pregnancy.
We are seeking expressions of interest for Renal Association Members to write new guidelines on the following topics:
- Medical management of stone disease
- Pregnancy and renal disease
To apply, please send a statement of no more than one side of A4, explaining why you would like to do this, along with a completed Conflict of Interest Form to Melanie.Dillon@renalregistry.nhs.uk by Tuesday 23rd November.