Beat MS Clinical Trial

So, I emailed the BEAT-MS clinical trial, and I was told to send them a medical release form but rather than waiting an additional two weeks I called the medical records department and had all of my medical records faxed directly to them. The lady from the BEAT-MS Recruitment Team was actually surprised and said told me that she would review them and so long as everything looked good, she would send them to the principal investigator in about 2 weeks. She was super helpful and very nice. On November 4th she messaged me that she sent my medical records to the principal investigator of the trial at OHSU which would take about a week to review. This was great and felt like everything was moving very quickly. 

On November 30th, I had still not heard from OHSU and reached back out to the recruitment team. She told me she reached out and they said they would be contacting me very soon. By December 8th, I still hadn't heard anything and reached out again. The coordinator was frustrated and reached out to the principal investigators and requested that he respond immediately. He told her on December 9th, that he was reviewing my information and should get back to me by the following week. I figured with the holidays coming up that there would most likely be delays due to people taking holiday vacations. I thought no big deal, I will be patient.

On December 23rd, I decided to reach back out. Mainly just so I didn't get forgotten in all the holiday craziness. She emailed me back, "Thank you for keeping me updated. I am unaware of the reason for the delay in OHSU's response to you. However, since it has been this long, I have escalated this to the senior clinical operations manager at ITN, our sponsor of the study. Both her and I have requested an immediate response from them on their status. I will notify you immediately when I hear back from them, and if you hear from them, please let me know. I appreciate your continued patience." At this point, I was very frustrated. Why couldn't they just send a quick email just to touch base with me?

Finally, I received a call from the TI Clinical Research Assistant. She wanted to start the process of screening me for the trial and sent me an informed consent form which I immediately signed and sent  a copy back as well as let her know that I would be prepared to bring it to her signed in person. she also wanted me to register on the OHSU system which I called and did. She told me that once everything was set up that they could get me scheduled for their screening visit. On January 9th she messaged me back that she would get with the coordinator to get me scheduled. On January 26th I followed up again and was told that he was super busy with their current subject and that once that settles down and they are all good with enrollment he will contact me. She said she didn't have a date but would ask him when he plans on it.

On February 8th, I asked if there had been any updates and she said that she apologized on the coordinator's behalf. She said, "He is super busy with our current participant making sure everything goes smoothly. You are the next person he will contact once they are ready to take on another participant." 

March 3rd was my final email to the Beat MS clinical trial asking if there had been any updates. I expressed my concern about starting Mavenclad soon in Mid to Late April. I received no response and I didn't initiate any further contact.

I really wanted to participate in this trial to further research comparing current drug-modifying therapies with HSCT for Multiple Sclerosis. I was rather let down by the lack of responses. I was also disappointed that I was the one initiating contact with OHSU and not receiving the same contact in kind but rather feeling somewhat ghosted. I later told my MS specialist about my experience with OHSU and she said that she would be filing a report to the Cleveland Clinic as well as OHSU because that was unacceptable. I never heard any updates nor did I care to inquire for them.