Potential cases
General Notes
Isabel Fortier came up with a shortlist based on consultations to help determine which Maelstrom partner projects may serve as potential cases. We then met on 2025-02-04, when, among other topics, we discussed the shortlist.
See the case selection protocol for further details on the parameters that guide how cases are to be determined.
Possible candidates
CITF
ReACH
Title: Stress and Anxiety During Pregnancy and Length of Gestation Harmonization Initiative + ReACH
Contact: Julie Bergeron
Reason: A small project and a very complex infrastructure-oriented network coordinated by Julie Bergeron. Both projects are finalized.
Notes: Julie Bergeron was a PhD student at Maelstrom, and Isabel says that she is probably the most knowledgeable person regarding data harmonization who I will encounter during my research. She worked on her dissertation project (Stress and Anxiety During Pregnancy and Length of Gestation Harmonization Initiative) while also leading work on ReACH, and her dissertation essentially served as one of a few pilot projects under the aegis of ReACH. ReACH was led by Isabel as its PI.
Both projects are complete, but Isabel thinks that Julie Bergeron will be able to share some significant insights on this past work. My instinct is that this presents an opportunity to explore how/whether harmonization is suited for doctoral training, the role of pilot projects within broader initiatives, and impact that closeness to the method of data harmonization might have.
Links:
CAPACIty
Ttle: Capacity: Building CAPACIty for pediatric diabetes research and quality improvement across Canada
Acronym: CAnadian PediAtric diabetes ConsortIum (CAPACIty)
Contact: Shazhan Amed
Reason: Across Canada, focus on clinical data. A lot of work already achieved, and harmonization will start soon. Will use a federated approach for statistical analysis.
Notes: A network of 15 childhood diabetes centers from across Canada. Went through four years of administrative work, and is now just starting harmonization after finally going through all theose hurldes, despite being very eager to get into the data work early on. Despite these challenges, Isabel thinks they will be very receptive to participating in the study.
SHAIRE
Title: SHAIRE: Scientific & Health Data Assets In Respiratory Research
Contact: Sanja Stanojevic
Reason: New project just starting, very interesting and dynamic.
Notes: Extremely new, just got funding very recently. I don’t know that much, to be honest. Could potentially provide redundant value to my study as Capacity, but need to find out more.
Respiratory study
Title: High-dose docosahexaenoic acid for bronchopulmonary dysplasia severity in very preterm infants: A collaborative individual participant data meta-analysis
Contact: Isabelle Marc
Reason: Very specific and small project, very clinical.
Notes: A very small project, harmonizing two datasets. I asked if this scale of work is common and Isabel says that it is, so it’s not an outlier.
Links:
MORGAM
Title: MOnica Risk, Genetics, Archiving and Monograph
Contact: Kari Kuulasmaa
Reason: European, started several years ago.
Notes: Older project, ended around 10 years ago, the PI is retired. Might be valuable for looking at broader impact and potential offshoots after the work has been completed.
Links:
Lifecycle
Very improvized approach to data harmonization, did a lot of “manual” work. According to Isabel, Julie Bergeron will be able to tell me more.
Links:
Recommended but no longer considered
CanPath
Title: CanPath, formerly called the Canadian Partnership for Tomorrow’s Health
Contact: Noah Frank
Reason: One of the most important harmonization initiative, infrastructure oriented, long-term started more than 10 years ago.
Notes: Other contacts include John Mclaughlin and Paula Robson.
My instinct is to look at how things change over the course of a very long and institutional initiative, especially across discrete phases marked by leadership transitions. But the history here is so vast and I will probably not get much of it through a series of interviews.
Mindmap
Promoting mental well-being and healthy ageing in cities. Seems very similar to CanPath in terms of scope and governance, and I would likely face similar challenges.