KidneyLink is a new online platform created by Can-SOLVE CKD to connect patients to research education and participation opportunities. If you are looking to recruit study participants or patient partners to join your research team, you can post your opportunity to KidneyLink. Other items that will be posted on KidneyLink include knowledge translation products, patient-oriented research events and news (such as recent publications).

Users will log into the platform to scroll through the listings or can use the drop down menus to filter the listings and see only those that they are interested in. Check out www.kidneylink.ca to sign up or learn more.

If you have a news item, event or opportunity that you wish to share, you don’t need to have a KidneyLink account, you can submit it to the website via this link.

If you have questions about the platform or would like promotional materials such as posters or postcards for your clinic, please contact Alicia at amurdoch@cansolveckd.ca.

Thank you to all who attended our meeting in Washington on November 6; it was a great event with lots of discussion!

There were presentations on upcoming trials from Dr. Bhanu Prasad, Dr. David Collister and Dr. Clara Bohm. We were also pleased to have two international researchers present their current work, Dr. Germaine Wong from Australia and Dr. Fergus Caskey from the UK.

There were also updates presented regarding ongoing projects with Dr. Michael Walsh, Dr. Amit Garg and Dr. Ron Wald.

The next meeting will take place in May 2020 at the CSN annual meeting being held this year in Halifax, Nova Scotia. Meeting details will be shared in the new year.

Below is the full listing of the trial names and investigators, in the order in which they were presented.

Pragmatic Randomized Trial of High Or Standard PHosphAte Targets in End-stage Kidney Disease (PHOSPHATE) – Update presented by Dr. Karthik Tennankore for Dr. Ron Wald

Registry of persons with kidney disease Considering participating in Research Database (RECORD) – Update presented by Dr. Karthik Tennankore for Dr. Michael Walsh

Dialysate Magnesium Trial (Dial Mg) – Update presented by Mr. Hans Vorster on behalf of the Dial Mg trial team

Renal Denervation (RDN) versus sham in patients with Loin Pain Hematuria Syndrome (LPHS) presented by Dr. Bhanu Prasad

Early integrated specialty palliative care in dialysis: A pilot cluster randomized controlled trial presented by Dr. David Collister

Hubs of care: Improving Communication and Individualization in in-centre HD Care presented by Dr. Clara Bohm

NAVKIDS program presented by Dr. Germaine Wong from Sydney, Australia

Prepare for Kidney Care (prepare for dialysis versus prepare for conservative care) presented by Dr. Fergus Caskey from Bristol, UK

Dr. David Collister presenting his trial

We are pleased to introduce our new CNTN Executive Committee Co-chairs! The Executive Committee is responsible for the overall strategic leadership and governance of CNTN. Our new Co-Chairs will ensure the integrity of the Executive Committee meeting processes and ensure that policies and processes regarding confidentiality, protection of privacy, and conflict of interest are strictly maintained. The Co-Chairs will also be responsible for maintaining a positive working relationship with committee members and approving the draft agenda for each meeting.

We are grateful for the dedication of our new Co-Chairs and appreciate their guidance in moving CNTN forward.

Hans Vorster was diagnosed with CKD (FSGS) 22 years ago. Subsequently, he has gained enormous respect and passion for patient-centered care and patient engagement in all aspects of medical care, including research. This has led him to be fully involved in several relevant organizations, Ontario Renal Network (ORN), KFOC, Organ Donation and Transplantation Collaborative (ODTC) and others, but principally with Can-SOLVE CKD.

Dwight Sparkes lives in St John’s Newfoundland and Labrador. In 2014, Dwight was diagnosed with chronic tubulo-interstitial nephritis, caused by drug interaction while undergoing treatment for his vasculitis. Today Dwight’s vasculitis is in remission but lives with the effects of Chronic Kidney Disease every day. Dwight joined Can-SOLVE CKD as patient partner in 2017 as way to give back and hopefully be able to contribute to improving the lives of people living with CKD.

Dr. Madore completed his training in medicine and nephrology at the Université de Montréal. He then obtained a Master’s degree in Epidemiology at the Harvard School of Public Health in Boston. Dr. Madore’s main research interests involve biomarkers and cardiovascular complications in patients with chronic renal failure. His research focuses on genetic markers or other biomarkers that can predict the course of kidney disease and its consequences in the population.

Dr. Tennankore is a nephrologist and associate professor of medicine. His clinical expertise includes chronic kidney disease and home dialysis modalities (home hemodialysis and peritoneal dialysis). In addition to resident clinical education, he has an interest in research methodology and runs the research rotation for nephrology trainees.

The Communications and Engagement Committee is launching a quarterly newsletter to keep network members updated on the activities of the CNTN committees, upcoming events, as well as, highlight recruiting trials and publications of its members. The first newsletter will be issued in September. If you don’t already receive emails from CNTN, sign up here to subscribe to the newsletter. If you would like your recruiting trial or recent publication mentioned in the newsletter, please email Alicia at amurdoch@cansolveckd.ca.

The CNTN Capacity Building Committee would like to help investigators be successful in conducting clinical trials and encourage physicians from both academic and community sites to participate in recruitment. The committee has created a survey to get to know the network members and determine the research needs. The survey will ask some basic questions about your affiliation, clinical research experience and what barriers you think are inhibiting clinical research. We are particularly keen to hear from and engage with smaller sites and those who wish to increase their research capacity, which is why the survey will ask for site name and contact.

The purpose of this survey is to perform a national environmental scan of nephrology research capabilities and resources available to conduct multi-centre studies in order to determine how CNTN can help sites get more involved. The results will help the Capacity Building Committee determine what initiatives would be most beneficial to the group.

Please click here to complete the survey.  The answers are all multiple choice and the survey should take no more than 10 minutes to complete. The survey will be open until Friday, September 13.

The CNTN will now include 3 working committees – Capacity Building, Communication and Engagement, and Scientific Operations

Based on the outcome of the visioning workshop in September 2018, these new committees have been formed. There will continue to be an Executive Committee, which will consist of the co-chairs of each working committee, along with 6 members at large, a Can-SOLVE CKD Leadership representative, an Indigenous Peoples Research and Engagement Council representative and the CNTN Project Coordinator. The Executive Committee co-chairs will be responsible for reporting to the Can-SOLVE CKD Steering Committee.

We have received a number of expressions of interest to take on leadership roles within the new structure of the CNTN. These have been carefully reviewed and vetted by the Can-SOLVE CKD leadership team, taking into account the need for a representative executive committee, inclusive of patient partners. The leadership team considered skill sets, experience, diversity and competing commitments and is pleased to announce the new committee roles.

We would like to express our heartfelt thanks to the current members of the CNTN Executive Committee, who have led CNTN through this period of transition. We are grateful for your time and guidance in moving CNTN forward.

Scientific Operations Committee

• Karthik Tennankore (Researcher co-chair)
• Hans Vorster (Patient Partner co-chair)
• William Beaubien-Souligny
• Clara Bohm
• Catherine Clase
• David Collister
• Anne MacPhee (Patient Partner)
• Nigar Sekercioglu
• Rita Suri
• Angela Tellez (Patient Partner)

Capacity Building Committee

• Sam Silver (Research co-chair)
• Dwight Sparkes (Patient Partner co-chair)
• Melissa Schorr
• Nigar Sekercioglu
• Angela Tellez (Patient Partner)
• LeeAnne Tibbles
• Hans Vorster (Patient Partner)

Communications and Engagement Committee

• Amber Molnar (Researcher co-chair)
• Gurvir Thind (Research Assistant at St. Paul’s Hospital, Vancouver co-chair)
• Bhanu Prasad
• Nigar Sekercioglu
• Mary Beaucage

Executive Committee

• Clara Bohm
• David Collister
• Francois Madore
• Amber Molnar
• Sam Silver
• Dwight Sparkes
• Rita Suri
• Karthik Tennankore
• Gurvir Thind
• Hans Vorster
• Mike Zappitelli
• Indigenous Peoples’ Engagement and Research Council representative – TBA
• Can-SOLVE CKD Leadership Team representative (ex-officio)
• Alicia Murdoch, CNTN Project Coordinator (ex-officio)

This is your chance to partner in innovation and contribute to better kidney health for all Canadians.

We’re excited to announce the launch of KidneyLink– a new online platform that connects you to the latest kidney health research across Canada!

KidneyLink is an online platform that will connect you with researchers looking to work with people like you. You will receive updates regarding opportunities to get involved in research and see the impact of your participation in real time! All are welcome to join. Whether you are a person living with kidney disease, a family member, a donor, or a caregiver, your voice is important. KidneyLink will connect you with a variety of opportunities focused on different areas of kidney health. You can choose to stay up to date on the topics that matter most to you!

Learn about innovations that will transform kidney health and sign up to get involved.