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One of the challenges at the Chromosome 18 Clinical Research Center is keeping up with the lives of over 700 people with a chromosome 18 condition. The challenge is equally on the research center side and on the participant side. The participating families make a commitment not just to the research center but to all the other families now and in the future. That commitment is to participate in an ongoing basis by responding to questionnaires and requesting that medical records be sent to us. We try to make it as easy as possible.
One way we do that regarding the medical side of participant’s lives is to periodically ask for a current medication list. We found that a list of medications tells us several things. We can learn about what issues were important enough to the participant to seek treatment. We can then make sure we have copies of the medical records supporting that treatment. If we don’t have the relevant records, we can then ask the family to have them sent to us. One of the gaps in our system to collect the participant’s medical records is that families request that their providers send records to us, but we don’t know what was requested, and families don’t know if records were sent or if the records sent were complete. One way to at least partially close the loop is through the medication list. By comparing the indications for taking each medicine we can check to be sure we have the supporting records. Sometimes the medication list alerted us to issue that we did not know about.
Also, by learning which medications were stopped and why they were stopped, we can begin to compare what works and what doesn’t work for the different groups of participants. So many conditions have numerous different medications and all too often finding the one that works is a matter of trial-and-error. If we begin to learn which classes or types of medications work best this can help to accelerate the trial-and-error search for an effective treatment. This is one part of what we mean when we talk about improving standards of care for people with chromosome 18 conditions.
This month we are initiating a new participant follow-up process at the Chromosome 18 Clinical Research Cener. In the past, we asked participants or their parents to fill out a form on paper or using Survey Monkey listing the current medications of the participant. Then we entered those data into our database. We have a new on-line tool that will directly enter the data into our database. This saves time and reduces the chance of error. Additionally, this will be sent to each family in the birthday month of the participant along with a request for any new medial records. We hope that by asking for annual updates in the birthday month, it will make it easier for families to remember when they last sent us information. The birthday month is always a good time to reflect and review progress and challenges. We hope this will make it easier for all of us in our collective effort to make lives better for people with chromosome 18 conditions.
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