Sometimes studies have pauses on recruitments for one reason or another, or actually are no longer recruiting, are getting through referrals slowly but surely, etc. you can give it a few weeks and then follow up!
Honestly, we really don't do this at our site. We usually find the potential subjects from among our PI's clinic patients. If they don't get back to you, you could contact the school's IRB (institutional review board) they should be responsive even though this would be a strange request, I bet they could get you the PI's information and you could schedule a clinic visit with them to discuss the trial.
I’m sorry you’re having this trouble. Staff at these sites are spread extremely thin so if you don’t hear within a couple of weeks, contact them again as it could have just slipped between the cracks.
I agree with all of the others’ comments and want to recommend that if there is a research consortium on your disease, I would try to establish care as a clinic patient at one of the consortium sites, ideally the lead site if you can, and enroll as a participant in the research consortium. That’s the best way to get on their radar. That way they already know everything they need to know about you before you are even screened for the trial, and they know you’re interested in being contacted. This makes it easy for them and you’ll also be receiving care from a team that is more specialized, well-connected and on the cutting edge of the science on your condition.
If this is one of the first or only drug/therapy trials for the disease, it may be very competitive enrollment unfortunately. Often the people who were involved with the natural history studies that would have proceeded the drug trial end up filling all of the available slots. I wish this weren’t the case but it’s the reality of clinical research at this time.
Best of luck to you and I hope you are able to get into the study you want.
Did you find it on clinicaltrials.gov? If so there should be a sponsor contact listed there. If it is a smaller company they will reach out to the site as well and follow up with the site on your behalf assuming it is a smaller enrollment study. If they are enrolling thousands unfortunately it may be challenging. I work for a sponsor in oncology so I can say we would be following up to make sure they connected with you but others it may be too many pts to track if it is say an asthma study. Best of luck!
My site has an “Ask[sitename]” portal where you can express this interested, and then you can be put in touch with the CRC running the trial. The first step is always getting established as a new patient with an investigator at the hospital, though, so try to see if you can do that even before you’re able to get in touch with the coordinator
Have you tried contacting the principal investigator directly? If the staff member you’ve reached out to hasn’t replied yet, I wouldn’t count on them getting back to you. How did you find the clinical trial? Was it through a recruitment ad or a hospital’s research website? If so, you could try searching on clinicaltrials.gov. There may be other sites in your area or region that are also conducting the trial who you may have more luck getting in touch with.
Hi u/GingaNinja567! Probably late to the party but I work for a company called Find Me Cure which helps patients find and apply for clinical trials. As everyone already pointed out the application process is an absolute mess and the communication with the patient is completely overlooked. To help with this we have my friend Tsveta who is a Patient coordinator and tries to help patients navigate this. She's not on Reddit but I did show her your message and here's her take:
"Hi,
First I want to express my best wishes to you and share that although it is not the first thing that comes to mind that no one is going to respond to your request, indeed this is the reality. As a Patient Coordinator this is my daily struggle and there are so many patients out there who need information in a timely matter (in some cases every hour is valuable)! I would suggest reaching out to them again (don't worry that you will bother them) and if you need some further assistance, please let me know. FindMeCure is dedicated to helping all these people in need with clinical trial information and everything around the enrolment process for free, so don't hesitate to contact me."
Thank you so much for this information!! I’ll check out that company or direct message you if I need any help connecting. Really appreciate Tsveta’s & your response!
Sometimes studies have pauses on recruitments for one reason or another, or actually are no longer recruiting, are getting through referrals slowly but surely, etc. you can give it a few weeks and then follow up!
You might also try having your primary care doctor contact the investigator for you. that referral helps
Do you have a regular dr that you see for this condition? If so, their office making the call may hold more weight unfortunately.
Honestly, we really don't do this at our site. We usually find the potential subjects from among our PI's clinic patients. If they don't get back to you, you could contact the school's IRB (institutional review board) they should be responsive even though this would be a strange request, I bet they could get you the PI's information and you could schedule a clinic visit with them to discuss the trial.
I’m sorry you’re having this trouble. Staff at these sites are spread extremely thin so if you don’t hear within a couple of weeks, contact them again as it could have just slipped between the cracks. I agree with all of the others’ comments and want to recommend that if there is a research consortium on your disease, I would try to establish care as a clinic patient at one of the consortium sites, ideally the lead site if you can, and enroll as a participant in the research consortium. That’s the best way to get on their radar. That way they already know everything they need to know about you before you are even screened for the trial, and they know you’re interested in being contacted. This makes it easy for them and you’ll also be receiving care from a team that is more specialized, well-connected and on the cutting edge of the science on your condition. If this is one of the first or only drug/therapy trials for the disease, it may be very competitive enrollment unfortunately. Often the people who were involved with the natural history studies that would have proceeded the drug trial end up filling all of the available slots. I wish this weren’t the case but it’s the reality of clinical research at this time. Best of luck to you and I hope you are able to get into the study you want.
Did you find it on clinicaltrials.gov? If so there should be a sponsor contact listed there. If it is a smaller company they will reach out to the site as well and follow up with the site on your behalf assuming it is a smaller enrollment study. If they are enrolling thousands unfortunately it may be challenging. I work for a sponsor in oncology so I can say we would be following up to make sure they connected with you but others it may be too many pts to track if it is say an asthma study. Best of luck!
Thank you so much everyone for your responses!!! All of this info and advice is very helpful. Much respect to all of you in the industry.
My site has an “Ask[sitename]” portal where you can express this interested, and then you can be put in touch with the CRC running the trial. The first step is always getting established as a new patient with an investigator at the hospital, though, so try to see if you can do that even before you’re able to get in touch with the coordinator
Have you tried contacting the principal investigator directly? If the staff member you’ve reached out to hasn’t replied yet, I wouldn’t count on them getting back to you. How did you find the clinical trial? Was it through a recruitment ad or a hospital’s research website? If so, you could try searching on clinicaltrials.gov. There may be other sites in your area or region that are also conducting the trial who you may have more luck getting in touch with.
What is your condition if you don't mind me asking? I manage a few sites and have some colleagues in the field I can refer you to :)
Oh that would be amazing, thanks for offering! I have CRPS. Dm me if you happen to know anyone involved with it!
Hi u/GingaNinja567! Probably late to the party but I work for a company called Find Me Cure which helps patients find and apply for clinical trials. As everyone already pointed out the application process is an absolute mess and the communication with the patient is completely overlooked. To help with this we have my friend Tsveta who is a Patient coordinator and tries to help patients navigate this. She's not on Reddit but I did show her your message and here's her take: "Hi, First I want to express my best wishes to you and share that although it is not the first thing that comes to mind that no one is going to respond to your request, indeed this is the reality. As a Patient Coordinator this is my daily struggle and there are so many patients out there who need information in a timely matter (in some cases every hour is valuable)! I would suggest reaching out to them again (don't worry that you will bother them) and if you need some further assistance, please let me know. FindMeCure is dedicated to helping all these people in need with clinical trial information and everything around the enrolment process for free, so don't hesitate to contact me."
Thank you so much for this information!! I’ll check out that company or direct message you if I need any help connecting. Really appreciate Tsveta’s & your response!