An Australian-built app is giving Hodgkin lymphoma survivors a way to report the long-term effects of treatment – including patients diagnosed more than half a century ago.
An Australian-developed app designed to track the lifelong effects of Hodgkin lymphoma treatment has won a major international research prize, as its investigators prepare to expand its use in survivorship research.
The MyHodgkin MyHealth app was awarded the Karl Musshoff Prize for Best Clinical Abstract at the International Symposium on Hodgkin Lymphoma, recognising an Australian proof-of-concept study that has already recruited 300 survivors.
The award, presented to Professor Judith Trotman, was accepted by fellow Concord hospital haematologist and principal investigator Dr Nicole Wong Doo at the symposium in Cologne over the weekend.
The app, developed in partnership with Hodgkin lymphoma consumers, allows patients to provide information about their treatment and subsequent health directly to researchers, potentially capturing outcomes decades after patients have left specialist care.
Dr Wong Doo said the award reflected growing international recognition of cancer survivorship as an important field of research.
“What it recognises is the project itself and the importance of recognising research into survivorship for cancer sufferers,” she told The Medical Republic.
“I think the organisers wanted to put their support behind an area of research that’s still emerging, and they wanted to showcase it.
“It reflects the degree of trust in us as investigators and Judith’s history of research and depth of research in lymphoma.
“This is about recognising Judith and the abstract and the area of research all piled into to one.”
Dr Wong Doo said the project originated with Professor Trotman, who began developing the concept years before patient-generated long-term health data became a mainstream research proposition.
“We’re very proud that we could carry forward this emerging area of research that Judith started this as a concept in 2020,” she said.
The international recognition suggested the idea was gaining traction, she said.
“I think it will become quite mainstream, quite accepted, and that’s what this award means to us. It’s recognised, and there’s trust, and there’s interest from all of our international [colleagues],” said Dr Wong Doo.
MyHodgkin MyHealth launched in Australia in March 2025 and had enrolled 300 participants by 12 June this year, with 231 providing survey data.
Participants ranged from people diagnosed just months earlier to survivors diagnosed 53 years ago.
Among 193 respondents, 23 reported 32 second cancer events, including non-melanoma skin cancer, non-Hodgkin lymphoma, and lung, breast, and thyroid cancers.
Twenty-six of 192 respondents reported a new or worsening lung condition since completing Hodgkin lymphoma therapy, while 120 reported experiencing neuropathic symptoms after treatment.
But Dr Wong Doo cautioned against interpreting the early figures as estimates of the prevalence of late effects among all Hodgkin lymphoma survivors.
Participants were self-selecting, meaning people experiencing health problems may be particularly motivated to take part.
Rather than being simply a limitation, however, that highlighted one of the purposes of the project, she said.
“There are people and survivors out there that want to tell us this,” Dr Wong Doo told TMR.
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“There’s other research that will give us a denominator of the sort of baseline, but what we are hearing is the patient’s voice.”
The early data also showed an association between radiotherapy and second cancers, with an odds ratio of 2.45, but Dr Wong Doo stressed that the finding was preliminary.
“It’s a univariate analysis, so we haven’t looked at all of the other factors that might modulate cancer,” she said.
“For me, it’s a proof of concept that we can identify that and make those associations.”
Of greater significance at this stage, she said, was evidence that the app could reach survivors who were traditionally difficult to include in research.
Almost 28% of respondents lived in regional or rural Australia and participants had also been recruited from remote areas.
“What we’re really, really proud of is that this has shown reach into regional, rural and remote Australia, which is typically where research doesn’t reach,” Dr Wong Doo said.
The app may also have an immediate benefit for participants by improving their understanding of the potential long-term consequences of their cancer treatment.
“It does educate and tell them what the potential side effects of treatment are, and patients tell us that they have either forgotten or didn’t know – they didn’t actually know that all these toxicities were potentially related to treatment,” Dr Wong Doo said.
That capacity could become increasingly important as Hodgkin lymphoma treatments change.
Dr Wong Doo said the arrival of newer immunotherapies created another long-term surveillance challenge because researchers did not yet know what toxicities might emerge a decade after treatment.
“If we can start right now with this relatively low-cost, scalable way of collecting data, we are hitting the ground running,” she said.
“Other data sources will catch up, and there’ll be other data to correlate … but we are ready to go right now, which is exactly where we need to go.”
The Australian pilot will next introduce longitudinal follow-up and patient-reported outcome modules, with researchers planning to explore using the platform for long-term follow-up and patient-reported outcomes in clinical trials.
Dr Wong Doo said the data could eventually do more than identify treatment toxicities, helping researchers examine inequalities in access to care.
Fertility treatment was one example, with the app collecting information that could expose geographic differences in access to IVF among cancer survivors.
“It’s about trying to start to chart quality of access,” she said.
The concept also attracted interest at the international meeting as a potentially low-cost way of collecting information about Hodgkin lymphoma treatment and survivorship in lower-income countries.
For more information on the app see here. See the abstract for the research here.
