FTD Research and Clinical Trials during the COVID-19 Pandemic


The past few years have been what we hope is the start of a groundbreaking time for discovery in clinical trials aiming to treat and prevent frontotemporal dementia (FTD).

Large FTD-focused international collaborations that span North America, Europe and beyond have enrolled large numbers of people living with FTD and their kin to elucidate further the earliest signs of disease onset, and to optimize the design and conduct of clinical trials.

Thanks to advances in genetics, molecular biology, and neuroimaging, several exciting potential therapeutic targets have been identified, and several clinical trials for FTD are underway, with more planned for 2020 and the coming years.

Of course, beginning in March 2020, many research activities were suddenly put on hold, slowed or stopped altogether because of the COVID-19 pandemic, as hospitals and governments quickly developed guidelines to slow the spread of the novel coronavirus. While these actions were appropriate and necessary, the interruption of such research activities may also slow the progress being made in FTD research. Canceled visits and missing data, lack of funds to cover pandemic delays in ongoing projects, and potentially diminished future enrollment attributable to fear of attending a clinic or hospital-based visit are all factors.

FTD research teams around the world have taken steps to ensure that our progress towards treating, curing and preventing FTD can continue with as little ground lost as possible.

Observational studies are research studies that “observe” the course of the disease via clinical histories, neurologic examinations, cognitive testing, brain imaging or blood testing without intervening. These studies are a critical way that we can understand the fundamental causes and course of FTD. For many observational research studies, in areas where COVID-19 cases are at their height, assessments have typically been postponed until local risks of exposure are reduced. As these studies are able to restart and visits are rescheduled, clinical research staff are being trained to screen both themselves and research participants for potential COVID-19 symptoms or high-risk exposures, and all are wearing appropriate personal protective equipment, which may include masks, eye shields, gloves and/or gowns depending on the nature of the visit and local policies. Social distancing guidelines are being followed, and examination rooms and other research spaces are thoroughly cleaned between each participant.

Some observational research studies are longitudinal studies, which means that people with FTD are followed over time and repeated observations or measurements are made. Large longitudinal FTD observational studies are ongoing right now, including the ALLFTD study in the U.S. and Canada, and the GENFI study in Canada and Europe.

The pandemic has caused many of these planned annual research visits to be postponed until research teams and participants can safely attend the clinics again. The resumption of longitudinal studies is a priority, so that the time and efforts already contributed by participants can be used to the full potential. If annual research visits within these studies have been delayed, the research teams will contact participants as soon as local guidance permits resumption of these important studies. If the rescheduled annual visits take place several months from the planned date, adjustments can be made when the data is analyzed to take into account the time period between visits to continue to maximize the impact of these essential studies.

A clinical trial is a research study through which participants are assigned to one or more interventions. An intervention in a clinical trial could be a medication, a device, or a behavioral program. At present several active clinical trials are investigating the potential of treatments to slow the progression, prevent the onset, or improve the symptoms of FTD.

As some clinical trials have important required safety assessments, in many cases these visits will have continued through the pandemic where possible. To reduce the loss of valuable data already generated by participants enrolled in these trials, clinical research teams have worked hard to resume any paused clinical trials as soon as possible at each site. They are also offering virtual visits and telephone assessments wherever possible. Clinical research staff and participants are following all local hospital recommendations regarding the use of masks and other personal protective equipment when in-person visits are necessary, to ensure the safety of all participants.

We know that while many of our families are eager to return to the clinics and research studies, others are reluctant to consider taking part in research until a vaccine or other treatment for COVID-19 is available. The considerations for each participant will be unique to their personal and local situation. With that said, we would like to reassure families that by following now standard clinic and hospital procedures for prevention of the spread of COVID-19, we are confident that, with these precautions in place, the exciting FTD research studies of 2020 will be able to safely conduct their activities.

Thank you to all of the people with FTD, family members and care partners who have generously contributed their time and effort towards finding treatments for FTD. Your contributions have brought the field to this promising time for clinical trials in FTD. We look forward to the scientific advances clinical research will bring for FTD in 2020 and beyond.

Elizabeth Finger, MD

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