Dystonia Research Continues despite COVID-19 Pandemic

Dystonia Research Continues despite Covid-19 Pandemic

By Jan Teller, MA, PhD, Chief Scientific Advisor

The unexpected and sudden arrival of Covid-19 has disrupted the lives of everyone, including researchers. The death toll and infection rates continue to rise around the world. Societies look to health and medical scientists to conquer the virus. The pandemic also impacts scientific research itself in an unprecedented way.

Laboratory work was put on pause. Only some researchers can continue operating their labs and projects. The financial ramifications have been severe. Academic and scientific institutions have lost revenue normally used to fund research; some people lost their jobs or simply cannot continue their regular duties. Many long-term experiments will need to re-start later. Doctoral students and postdoctoral fellows have been most severely affected. Social distancing prevented not only normal work but also scientific meetings, established collaborations, or other interactions that are typically necessary for conducting clinical trials or research involving patients. Recruitment of new study participants has slowed or stopped. Relatedly, the impact on patient care has been profound. Many clinicians—including movement disorder specialists—were assigned to other, Covid-19-related emergency duties. Dystonia patients have experienced widespread and prolonged appointment cancellations, in many cases disrupting botulinum neurotoxin injection schedules or deep brain stimulation procedures. At the same time, unforeseen opportunities have been revealed. Investigators who were forced to stay home had to come up with creative solutions to maintain research productivity. Paradoxically, the pace of publishing has not dropped. Unable to access their labs and places of work, scientists have used this time to analyze the data they already had, devoting more time to thinking about new ideas or future projects. Interestingly, the number of grant applications to the National Institutes of Health has not dropped significantly. Crisis drives change, shifting focus to finding new, unexpected opportunities. Collaborations within research institutions may strengthen, many internal policies and procedures will evolve, long-term support within organizations may stabilize institutional research by reducing reliance on external income sources. Fortunately, dystonia research has not been dramatically affected. More papers are being published, grants submitted. Research that relies more on theoretical and conceptual approaches is flourishing. Some labs have begun to re-open. Although many meetings have been postponed, dystonia scientists are in constant touch by video conference and other communication means. The virtual annual meeting of the Dystonia Coalition in June attracted an unprecedented number of first-time attendees due in part to ease of participation without travel. Movement disorder clinicians are calling attention to the urgent need for novel approaches to patient care, recognizing that the pandemic has had a distressing impact on many individuals and families impacted by chronic diseases and disorders including dystonia. Many movement disorder clinics have begun using telehealth and telemedicine technologies. Ironically this shift begins to finally address challenges many in the dystonia community have faced for decades, in terms of the frequent travel and mobility obstacles to visiting movement disorder clinics for treatment. Many health care providers across disciplines are mobilizing online platforms to help patients access not only important medical services but also supportive therapies such as physical and occupational therapy, and mental health services. While telemedicine consultations and assessments have their limitations, the pandemic may permanently and positively change the care of dystonia patients by making it easier to have access to doctors and health care providers outside in-clinic visits.

It will take time before we can fully comprehend the impact of Covid-19 on science and research. It has been and will remain, profound—and hopefully, in numerous ways, for the better. 

 

Republished, with permission from DMRF Dystonia Dialogue, Winter 2020 Vol 43, No 3.