By: William Underwood, MSA Coalition General Advisory Council
There are many frustrations that come with being a care partner for an MSA patient, but the biggest one for me is how difficult it is to find compatible trials to enroll in. I am the care partner for my wife of 54 years. As of this moment my wife cannot meet the criteria for any trials, and I have spent hundreds of hours searching and contacting trials. After jumping through many hoops, she did get a compassionate care single-use drug Verdiperstat, which showed promise, however it did not slow the progress of the disease.
We are members of a support group of approximately 30 people, and to my knowledge, most have not even tried to enroll in a trial, as they find it too complex and are waiting for the doctor to recommend a miracle cure. What would really be helpful would be to have a database which could have the ability to quickly match patients with the best trials and expedite care, hopefully prolonging the quality of life for many patients.
My wife is 75 years old and was diagnosed with Parkinson’s Disease in late 2016. She is being treated at the U.R. Neurological Clinic, and while they are very helpful, they do not have the time to keep up-to-date on new trials and possibly recommend them to patients, leaving it to care partners to search on their own.
Trying to sort through trials that hold promise is very time-consuming. If you do a search based on unlimited travel and multiple symptoms you come up with hundreds of trials in progress, but most of do not affect my wife’s specific disease progression.
I begin all searches by using the following criteria;
- First, is it first interventional (i.e. participants are assigned to groups that receive one or more intervention/treatment)?
- Next, can I reasonably get to the location?
- Finally, does she match the many inclusions and exclusions? This can be a complex task, reviewing age limitations, conflicts in medications, required washout periods, physical abilities, H&R scale etc.
Another critical consideration is seeing if this trial medication or procedure may exclude you from other trials that may show more promise in the future. This can be a tough decision as you may not have enough information to make this decision. New trials are constantly under development and your personal window of opportunity may be limited due to general health and disease progression, so this consideration is not always easy.
My concern and that of many others is that we will miss a chance to help our loved ones because we do not have the capability to locate the best trials. It takes a long time to review critical trial criteria to see if each trial does apply to you and do a risk/ benefit assessment. Then we must contact the trial team for a consent to release medical records form and then request medical records to be sent in a timely manner for review by the trial team (this usually will require follow-up) and allow them to make an initial decision on your acceptance. This can take several weeks and is a very nerve-racking experience!
I feel that this is a time-consuming clumsy process and would like to suggest that neurology centers use their existing individual patient medical databases and compare this data with the trial criteria in the various trial websites. This would require either a person or a program be trained to go through trials and sort by requirements, but it would save a lot of time for patients and caregivers.