The Renal Association invites expressions of interest from its members for the position of Chair of the Rare Diseases Committee detailed below. The deadline for submission of a formal expression of interest is 13 May 2018.
Role Title: Chair of the Rare Diseases Committee (RDC)
Appointed by an Appointments Panel
Reporting To: Academic Vice President
Responsible To: Renal Association Trustees via the Renal Information Governance Board (RIGB)
Tenure: Three years
Start Date: June 2018 – Post Annual General Meeting
The chair of the Rare Disease Committee (RDC) has a key role in the development and delivery of the Rare Renal Disease strategy of the Renal Association (RA). They are responsible for all aspects of the Committee’s activity as well as oversight of the 25 Rare Disease Groups (RDGs). The Chair and committee work closely with and have strategic input into the operation management and development of the UK Registry for Rare Kidney Diseases (RaDaR). RaDaR is funded through capitation from each Renal Unit. The Chair will be the professional and public face of the RAs rare disease initiatives. The role of Chair of the RDC is supported by an Operations Manager, employed by the UK Renal Registry.
Development of the opportunities created by the RDC in establishing RaDaR is seen as a key strategic aim of the Renal Association.
This is an exciting opportunity to leverage clinical service and research opportunities offered by the large cohorts of patients with rare kidney diseases already collected by RaDaR. The research opportunities could be achieved by analysis of current cohort data, ‘Big data’ linkage and investigator led or pharma input into projects.
The role comprises 2 key areas of activity:
- Strategic input into the operational development of RaDaR
- Chairing the Rare Disease Committee and supporting clinical and research output from the RDGs
Responsibilities of the Role
- To prepare an annual business plan for the RDC
- To prepare written reports of the business of the RDC and delivery of the annual workplan for the Academic Affairs Board and Executive Committee
- To work with the AVP to encourage a culture of active research through each RDG.
- To act as an advocate for research, clinical progress and patient empowerment in rare kidney diseases both within the RA and with relevant external individuals and organisations
- To act as a conduit for exchange of ideas and innovation between the RDGs, other relevant individuals and organisations both within the Association and externally
- To convene and chair meetings of the RDC at least twice a year (be responsible for producing an Agenda and approving minutes) and maintain committee business using e-mail and telephone communications between meetings
- To support the Rare Disease Groups by monthly communications and regular engagement with RDG chairs and committees
- To attend the RA Executive Committee RIGB and Academic Affairs Board meetings (usually by TC).
- Ensure the RDGs provide as a minimum an annual report, patient information and evidence of activity through annual reports.
- To champion improvements in training in rare disease and development of service standards for rare diseases
- To ensure the Committee’s website area is kept up to date with information about the current Committee membership, minutes of meetings and other relevant documents
- To keep the membership of the RA informed of the Committee’s activities through the website, monthly news, and other communications channels.
- Active member of the Renal Association in good standing
- An interest in rare renal diseases
- Excellent communication skills
- Leadership experience.
- Track record of excellence in delivering clinical services for rare renal disease
- Membership of one of the rare disease groups
- Research experience in a rare renal disease
- Experience in patient and public involvement
- Experience in rare disease education and training.
For those considering this position we invite you to informally discuss it further with one of the following:
Please direct all formal expressions of interest in writing directly to the Renal Association Secretariat, via email firstname.lastname@example.org no later than the deadline of Sunday 13 May 2018. Candidates are asked to provide a maximum of a 1 side of A4 letter of application and a brief CV.
The Renal Association recognises and actively promotes the benefits of diversity. We welcome applications from all backgrounds, regardless of race, gender, disability, age, sexual orientation, religion or belief.
We are delighted to announce that the NIHR portfolio support for RaDaR has been renewed for the 2018-19 financial year, thanks to the generous support of Kidney Research UK. This provides accrual support for RaDaR up to 31/03/2019.
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.
On Wednesday 28th February 2018 a joint patient and clinician event was held at the Queen Elizabeth Hospital, Birmingham to celebrate RaDaR’s achievements to date and consider where we go in the next ten years.
The Agenda, a report from the day and pdfs of the presentation can be found below.
RaDaR Meeting Agenda
RaDaR Meeting Report
RaDaR Introduction – Melanie Dillon
RaDaR Future – Detlef Bockenhauer>
Examples of research using RaDaR – Liz Colby
Membranous Nephropathy Presentation Paul Brenchley
Kidney Research UK – Sarah-Louise Harwood & Tracey Murray
Kidney Care UK – Fiona Loud
The 15,000th UK RaDaR patient was recruited on the 10th October 2017. This is a fantastic achievement and a testament to all the hard work and support that the 87 currently recruiting hospitals have given to the project over the years. Many thanks to you all.
The latest RaDaR amendment has now been approved by Ethics. The main changes concern clarification that RaDaR consent covers Patient View Sign-up, subject to local availability, and that patients consent to being contacted directly by a member of the central RaDaR team and/or their Rare Disease Group Lead regarding information events or further research studies.
The amendment also allows for data linkage to other registries, including the Hospital Episode Statistics (HES) and Office for National Statistics (ONS) databases. This will enable a far more comprehensive RaDaR data-set than is currently available with manual data entry. It will also allow for longitudinal follow-up of patients who have previously consented to condition-specific research studies, or who do so in the future.
Copies of the new documents have been sent to all current sites and are also available from the Criteria and Consent page.
If you have any queries about the amendment please contact Melanie.Dillon@RenalRegistry.nhs.uk
Following a review of our revised consent documents by NHS Digital, we have just submitted the latest RaDaR amendment to the South West – Central Bristol Research Ethics Committee.
The main changes concern clarification that RaDaR consent covers Patient View Sign-up, subject to local availability, and that patients consent to being contacted directly by a member of the central RaDaR team and/or their Rare Disease Group Lead regarding information events or further research studies.
The amendment will also allow for data linkage to other registries, including the Hospital Episode Statistics (HES) and Office for National Statistics (ONS) databases. This will allow for a far more comprehensive RaDaR data-set than is currently available with manual data entry. It will also allow for longitudinal follow-up of patients who have previously consented to condition-specific research studies, or who do so in the future.
No action is required on behalf of the sites at present. We will everyone informed as to the progress of this amendment and let you know when it is approved.
If you have any queries about the amendment please contact Melanie.Dillon@RenalRegistry.nhs.uk
The Oxalosis & Hyperoxaluria Foundation (OHF) and Dicerna Pharmaceuticals invite you to participate in a webinar on Tuesday, August 15, 2017 at 16.00 hours GMT to discuss research presented by Dicerna during the 12th International Workshop on Primary Hyperoxaluria in Tenerife, Spain in July.
At the meeting, Dicerna announced the expansion of its drug development programs to encompass all forms of primary hyperoxaluria (PH). Based on new pre-clinical data presented in Tenerife, the investigational therapy DCR-PHXC has the potential to treat all forms of PH.
The webinar will provide an overview of the following research topics:
• The need for new treatment strategies for all types of PH
• The role of the LDHA gene in the pathogenesis of PH
• The DCR-PHXC preclinical data demonstrate potent, durable, and precise knockdown of LDHA in animal models of PH1, PH2 and idiopathic PH, and show a simple, direct linear relationship between LDHA inhibition and oxalate production
• Clinical development plans and timelines for DCR-PHXC
• Kim Hollander, Executive Director, Oxalosis & Hyperoxaluria Foundation
• Dr Sally-Anne Hulton, M.D. Paediatric Nephrology, Birmingham Children’s Hospital UK
• Ralf Rosskamp, M.D. Chief Medical Officer, Dicerna Pharmaceuticals
Ask a question by emailing: email@example.com (subject line: Dicerna Webinar) by Sunday, August 13, 2017.
The Summer issue of the RaDaR Newsletter features updates from the IgA Nephropathy and aHUS groups, details of a Cystinosis patient information event in Birmingham and important information about the forthcoming Ethics amendment.