Lessons learned so far: a case series of "study-a-thon" events within the OHDSI and European IMI communities

Objective: We introduce and review the concept of a study-a-thon as a catalyst for open science in medicine, utilizing harmonized real world, observation health data, tools, skills, and methods to conduct network studies, generating insights for those wishing to use study-a-thons for future research.

Conclusions: A study-a-thon is a focused multiday research event generating reliable evidence on a specific medical topic across different countries and health systems. In a study-a-thon, a multidisciplinary team collaborate to create an accelerated contribution to scientific evidence and clinical practice. It critically accelerates the research process, without inhibiting the quality of the research output and evidence generation, through a reproducible process.

The full article was published in JAMIA Open.

PIONEER collaborates with EHDEN & OHDSI on a prostate cancer Study-a-thon

Objective: More than 100 researchers came together virtually in March 2021 for five days representing seventeen prostate cancer patient databases from six countries. Two protocols were developed and submitted and are currently in execution: the first, assessing the impact of comorbidities and life expectancy on the long-term outcomes of patients managed with watchful waiting or active surveillance, and the second on the development of prediction models for the time to symptomatic progression, palliative treatment initiation or death within a specific timeframe for watchful waiting patients.

Conclusions: Organising this study-a-thon was a major collaboration between the IMI’s PIONEER and EHDEN projects and demonstrated that the OHDSI and EHDEN network study approach using the OMOP CDM can be reproduced quickly in communities that are new to this, such as the urologists and clinical researchers in PIONEER. It was also a very multi-disciplinary event, bringing together clinicians, researchers, and software developers, and as a highlight, patients sharing their stories and key questions about our understanding of the disease.

Protocol publications: 1 and 2

The following podcast and blog offer more information about this case.

Study-a-thon: The use of COVID-19 Medicines over time

Objectives: Four-day study-a-thon with 330 colleagues from 30 countries in March 2020 to work on characterisation, effect estimation and prediction studies, supported by deep literature review. A key study output was the determination of the safety of Hydroxychloroquine (HCQ) and AZ (azithromycin) and how this impacted on Regulatory decisions. The event marked an unprecedented level of global collaboration: there were 17 concurrent channels that hosted more than 100 collaborator calls and 12 global huddles. More than 10,000 publications were reviewed and 13,000 plus chat messages helped design 355 cohort definitions and nine protocols, as well as the release of 13 study packages. As of August 2021, the OHDSI community has published ten COVID-19 studies and more are in the pipeline, with ongoing protocols.

Conclusions: HCQ alone is generally safe, but in combination with AZ it shows a doubling of risk of 30-day cardiovascular mortality; psychiatric safety of HCQ: no increased risk of depression, suicidal ideation or psychosis for new users of HCQ with RA. One example of the results can be found here in The Lancet Rheumatology.

Study-A-Thon: The use of DMARDS for Rheumatoid Arthritis globally

Objectives: In January 2020, 50 experts met in Barcelona for one week. They examined a large, multinational drug usage study; a csDMARD safety study; and the prediction of cardiovascular disease, infections and leukopaenia.

Conclusions: Compared to MTX users, patients treated with LEF had a lower risk of overall cancer. Risk of four specific cancers did not differ by first line csDMARD exposure.

Results were published in an EULAR abstract.

Proof of Concept - Oxford Study-a-thon

Objective: Forty experts came together for one week in December 2018 to validate EHDEN’s study-a-thon approach. To this end, they generated evidence to compare the risk of post-operative complications and mortality between partial and total knee replacements. Several years of safety, implant survival, and effectiveness (pain and function improvement) research were replicated in one week.

Conclusions: Older patients showed better results with the partial knee replacement surgery and total knee replacement was better for younger patients. Results were published in The Lancet Rheumatology.