New blog post: Call for research on DM1

"I want to end this post with a plea to all DM1 researchers, from a DM1 patient and a fellow researcher:

Please don’t waste our time, our lives, by not reporting everything you found. Don’t omit or hide statistical tests that “didn’t show anything”. Got a feeling your results won’t hold if you do this or that with the data or tests? Please report it explicitly in the paper; be transparent about your doubts and the uncertainty of the results.

Please don’t waste our time by having unexplained deviations between your preregistration (protocol) and the scientific report. Please make sure to make the materials you used and the anonymised data publicly available in an online repository so that other researchers can build upon your work; don’t waste our lives by keeping these crucial components of the research to yourself and your closest colleagues. Same goes for the scientific report: please make it publicly available online for us all to learn from and build upon.

Please show us respect by not engaging in underpowered research. If you can’t get enough data for your study, try collaborations with other teams or to make your study design more straightforward to increase its statistical power. Other ways to solve the problem may sometimes be to employ Bayesian instead of frequentist statistics."

A second blog post about myotonic dystrophy type 1 (DM1). Here I deal professionally and privately with the fact that we who live with DM1 tend to underestimate the severity of symptoms, be apathetic, and unable to engage in physical activity although it might give us a longer time to live.