The International Society of Nephrology (ISN) and The George Institute for Global Health have signed a Memorandum of Understanding (MoU) to develop a network of patients with kidney disease willing to participate in clinical research projects, accessible through a single global chronic kidney disease platform, the Global Kidney Patient Trials Network (GKPTN).

The GKPTN aims to accelerate the development of new treatments for the benefit of millions of people globally who suffer from kidney disease and associated chronic conditions such as cardiovascular disease, diabetes, and high blood pressure.

Professor Hiddo Lambers Heerspink, Co-Director of the Better Treatments Program at The George Institute for Global Health, says the GKTPN will help address current roadblocks to clinical research essential for driving improvements in treatments and care for kidney disease.

“New structures that facilitate patient access to trials are urgently needed to speed up the discovery of novel therapies and to reduce the burden of kidney disease on patients and health systems,” said Professor Lambers Heerspink. “Although some progress has been made in the discovery of new treatments for kidney disease in recent years the risk of kidney failure and cardiovascular disease remains high and more clinical trials to proof efficacy and safety of novel therapies are critical.”

“Through the GKTPN, The George Institute looks forward to working with the ISN and the global research community to bring patients and trials closer together, address evidence gaps, and facilitate more rapid translation of new kidney disease interventions into clinical practice,” he said

Finding participants who are suitable for and willing to participate in clinical studies is time-consuming. The GKPTN collaboration will help establish a global network of willing patients who can be contacted quickly when an appropriate study becomes available. By enhancing clinical research into kidney disease, the platform will also help build capacity, train the next generation of clinical researchers and connect the global kidney disease community.

Dr David Wheeler, Chair of the International Society of Nephrology Advancing Clinical Trials (ISN-ACT) Committee said: “This project is aligned to the aims of the ISN-ACT Committee. ISN-ACT is delighted to be able to work with The George Institute on this project, which should enhance participation of kidney patients in future clinical research studies.”

To achieve the key objectives of this collaboration, a global umbrella network of established patient trials networks and registries, The ISN Patient Trials Network, will also be created. By collaborating with other established ventures worldwide, the GKPTN will be the initial member of the ISN Patient Trials Network.

As low- and middle-income countries are disproportionately impacted by the growing burden of kidney disease, addressing inequities in access to healthcare underpins the focus of the GKPTN and The ISN Patient Trial Network. 

Dr Sradha Kowal, nephrologist at Prince of Wales Hospital in Sydney Australia and Program Head of the Renal and Metabolic Division at The George Institute said: “The GKPTN concept has arisen from widespread discussions with clinicians and members of kidney disease organisations and is intended to belong to and serve the interests of the global kidney disease community.”

To find out more or get involved with the GKPTN email gkptn@georgeinstitute.org.au.

Dr Cheryl Carcel, Research Fellow at The George Institute and a clinician with over ten years of experience in neurology, has secured two new grants to support her pioneering work in achieving better representation for women in stroke trials.

There is increasing recognition of sex and gender differences in stroke. While women and men have a similar (one in four) lifetime risk of stroke, women are more disabled, have worse quality of life, and require more supportive care.

Dr Carcel’s recent paper published in Neurology®, the medical journal of the American Academy of Neurology, found that more than three quarters of international stroke trials enrolled less women than the expected proportion that experience stroke in the community.

This makes it harder to interpret what the findings really mean for them and has implications for how women with stroke may be treated in the future.

The World Stroke Organization will provide US$20,000 to support a pilot project using screening information from large stroke trials and a survey and focus group discussion with stroke survivors to design strategies that will boost the recruitment of women.

Dr Carcel has also received A$10,000 from the Mary Jane Foundation - a philanthropic organisation offering small grants to not-for-profit groups and organisations working to advance the health and wellbeing of Australian women and girls. This additional funding will also go towards the pilot project.

It is hoped that the pilot study will lead to a larger and more ambitious study that will ultimately increase the participation of women in stroke trials, improving the reliability and validity of the evidence for stroke treatments in both men and women.

The first cycle of the virtual Noncommunicable Disease Lab (NCD Lab) thematic area on Women and Girls has been won by a submission that focuses on tackling the stigma faced by women and girls living with diabetes in the Democratic Republic of Congo.

Dr Belma Malanda’s winning submission, on ‘Empowering women bearing the double burden of diabetes and social discrimination’, aims to prevent and reduce the burden faced by women and girls living with diabetes through access to diabetes care, information, education, and opportunities to live safer, less stigmatised, lives.

The NCD Lab thematic area on Women and Girls is co-chaired by The George Institute for Global Health and the World Health Organization’s GCM/NCD Secretariat, and offers a platform for innovative, game-changing projects. It brings stakeholders together to tackle NCD challenges, address their risk factors and determinants, and facilitate an integrated, multisectoral response.

The second cycle of the NCD Lab is open until 22 November 2021. The thematic area on Women and Girls is inviting submissions on primary healthcare innovations for NCD prevention and care which leverage lessons learned from COVID-19 and other infectious diseases to improve access for women and girls. Find out more and apply here.

Dr Malanda’s initiative, which (subject to funding) he hopes to start implementing in coming months across communities in East Congo (Sud-Kivu), will focus on the development of awareness-raising and anti-stigma campaigns to reduce diabetes-related stigma, with a phased approach. Phase 1 will include a baseline analysis of the burden; Phase 2 will implement diabetes education program activities such as peer-to-peer empowerment, and working with community champions to develop testimonies of status disclosure and experience of living with diabetes; Phase 3 will evaluate findings.

The planned outputs include a database on rights violations and discrimination against women and girls with diabetes to inform a policy brief to be updated annually, and key project messages to incorporate into an advocacy strategy designed to empower women and girls living with the condition.

Dr Belma Malanda said:

“I am extremely honoured to be receiving such an important award, the first of its kind from the NCD Lab stream on Women and Girls. This initiative will help in increasing recognition of the linkages between diabetes and women’s and children's health, support the integration of diabetes into existing health systems and maternal and new-born child health initiatives, and empower girls and women to prevent diabetes in current and future generations.”

“I am truly grateful for the recognition I have received for my work, because I am very sure that every other nominee for this award was as capable – if not more – of winning.”

Two further submissions were shortlisted, with the support of the Women and Girls steering committee. Isaac Felix Edimu proposed KAPELA, a screening, sensitisation and training program to enhance the prevention, management and control of NCDs in communities and families in Uganda through outreach teams and targeted referrals to local health facilities.

Also shortlisted was Salvatory Makweta Mlaga’s proposal of the HELLPER Program in the United Republic of Tanzania. Known as ‘the moving specialized hospital’, the aim of HELPPER(TZ) is to run comprehensive mobile healthcare clinics in rural regions to improve access to basic health services and prioritise the screening and diagnosis of NCDs including breast and cervical cancer.

Dr Guy Fones, Head of the Global Coordination Mechanism on NCDs at the World Health Organization said:

“These projects have the potential to make a significant impact in reducing stigma around diabetes and enhancing equitable access to diabetes treatment and care. The winning submissions could potentially also inspire similar projects in other communities or countries.”

The NCD Lab also includes thematic groups on NCDs and the Next Generation, and Meaningful Engagement of People Living with NCDs and Mental Health conditions. All three thematic areas announced their respective winners and shortlisted submissions via the WHO Knowledge Action Portal, with further promotion of the winners planned through showcases on social media, news stories, and webinars.

On Thursday 4 November 2021 a webinar reflecting on the launch of the NCD Lab, showcasing all first-cycle winners, and announcing a call for the second Lab Cycle was held. Speakers included WHO’s Dr Peter Singer (Special Advisor to the Director General), Dr Svetlana Akselrod (Director, Global NCD Platform), Dr Bente Mikkelsen (Director, NCD Department) and Ms Louise Agersnap (Director a.i. and Head, WHO Innovation Hub, Department for Digital Health & Innovation.

For updates on the NCD Lab please sign-up to the WHO Knowledge Action Portal newsletter here, and check out The George Institute’s webpage.