› Forums › General Melanoma Community › Clinical Trials
- This topic has 10 replies, 3 voices, and was last updated 4 years, 3 months ago by
Summer S..
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- January 13, 2020 at 10:18 pm
Hi everybody,Hope we are all getting healthier and happier everyday!
Stage IV still did not get lucky with either immunotherapy or targeted therapy, we are trying old school chemo for now. Spirits are up though and we are really hoping for the best!
So we have been trying to enroll in clinical trials for a while but without any luck, people basically do not respond to emails and we live in Africa, I almost have given up, if it was not for our two good fellows here Ed and Jackie who halve encouraged me to dig deeper
So, does anybody have a tried method or a direct contact that could help?
We are looking across Europe and US as wellLemme know!
Love
S.
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- January 14, 2020 at 2:15 am
Hi Summer,
First of all Hugs! My next question since I haven’t dealt with Clinical Trials in Africa, is are you willing to travel or do you want to find Clinical Trials in Africa? It sounds like you are willing to travel which is great. I’m assuming you are going off the emails listed in ClinicalTrials.gov record per trial which is usually the Principal Investigator, and their inboxes are so huge, my guess is your email is getting lost in there. Usually, it’s best to go through study coordinator as PIs are notoriously bad at managing their inboxes (not because they are bad, they are just so busy, these researchers usually are involved in clinical care, research, and get hundreds if not thousands of emails a day). But looking at the ct.gov records, looks like they just list the PI on the ct.gov record and not a study coordinator email (because study coordinators can change, PIs usually don’t and if they do, it would be updated in ct.gov). Investigators usually have admin staff managing their email and calendars. If there are studies that you are particularly interested in, I would try to find the admin of the PI which might be able to find through their institutional directories. I would also make sure to have a email title that stands out, something like “TRIAL NAME: SUBJECT WANTS TO ENROLL IN _________ CLINICAL TRIAL” – EMAIL REGARDING TRIAL #xxxxxxxxxxxAlso, I know you are in Africa, but is it possible to call the PI, looks the the ct.gov record lists the PI number, that might get you immediate access if you say you are working to enroll in a clinical trial. even if you get voicemail, I would say I’m a subject (or relative of a subject) that is looking to enroll in this study and have looked at criteria, “what are next steps:” I know the trials I work on, our PIs would fall all over eachother to get a call like that. the response would be immediate, their top priority is enrolling. Their study won’t stay active if they can’t enroll enough to be statistically sound or powered.
I will ask my NIH contacts if they know best way to get around this as well and the study coordinators I work with and see how they get contacted and where you would find their info? They might have some ideas if there is another mechanism or way to get attention of the investigator. I will also reach out to the medical librarians here at University of Michigan as well as I’ll email the National Library of Medicine to see if they have any resources on how to go about this in Africa. Clinical Trials does have a country search filter, are you in a particular country in Africa? I’m going to apologize since Geography was not taught consistently when I was growing up and it is by far my worst subject.
I have a very busy next few days on a study, but I will dedicate time on Friday to get some answers for you. I have a few contacts that may help.
Hugs
Jackie-
- January 15, 2020 at 12:27 pm
Hi Jackie,Thank you so much for the warm hugs and the super helpful detailed information.
Yes, we are willing to travel – actually melanoma is super rare here, and most of its drugs are not registered locally, let alone clinical trials.
I can certainly make calls to PIs and I will do exactly as you explained.
I will stay tuned for more information whenever you have time 😉 you can directly Email me if that is more convenient [email protected]
Love,
S. -
- January 15, 2020 at 12:27 pm
Hi Jackie,Thank you so much for the warm hugs and the super helpful detailed information.
Yes, we are willing to travel – actually melanoma is super rare here, and most of its drugs are not registered locally, let alone clinical trials.
I can certainly make calls to PIs and I will do exactly as you explained.
I will stay tuned for more information whenever you have time 😉 you can directly Email me if that is more convenient [email protected]
Love,
S. -
- January 15, 2020 at 12:27 pm
Hi Jackie,Thank you so much for the warm hugs and the super helpful detailed information.
Yes, we are willing to travel – actually melanoma is super rare here, and most of its drugs are not registered locally, let alone clinical trials.
I can certainly make calls to PIs and I will do exactly as you explained.
I will stay tuned for more information whenever you have time 😉 you can directly Email me if that is more convenient [email protected]
Love,
S.
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- January 15, 2020 at 10:30 pm
Hi Summer, looking at your email address I assume univ of Egypt and with that I would recommend Sheba Hospital in Israel where they offer a world leading TIL’s program for many years, see link following as well Dr. Omid Hamid talks highly of Dr. Palol A Ascierto in Napoli Italy see links following. Both location would be worth looking into, not sure on what trials that might be open but I would assume they would have several between the two locations. 8:41 min mark of Tils video shows Til’s location from years ago when I first came across Dr. Patrick Hwu of MD AndersonBest Wishes!!! Ed https://www.google.ca/search?source=hp&ei=fIcfXoKvCIWstQbsx4P4Aw&q=TiL%27s+therapy+Sheda+Israel+melanoma&oq=TiL%27s+therapy+Sheda+Israel+ https://www.youtube.com/watch?v=yGzJzzGj5Jw https://www.esmo.org/Profiles/Paolo-A.-Ascierto https://twitter.com/PAscierto-
- January 15, 2020 at 10:32 pm
Here is first link to Sheba Hospital again. https://www.shebaonline.org/til-melanoma-treatment-israel/ -
- January 18, 2020 at 1:26 pm
Hi Summer,I love Ed’s ideas and contacting the clinical trials unit at the leading institutions near you which is providing world class TIL treatment might be the quickest route. on his links they have a contact us section, they probably have recruiter/coordinators/PIs that all get pinged with those emails that come from the “contact us” box. Israel is known as having the top in the world medical treatment facilities and known for medical tourism since so many people travel there for treatment.
Just an update, I sent out requests for information yesterday to multiple people including study coordinators for any advice on quickest way to reach someone that can help directly if Study PI is not responding. Often, some of these study have public websites that have contact buttons that probably go directly to recruiters or coordinating centers. Just like the links from Ed which have a contact us box on thr right. Many trials do have a public website or facebook page (IRB approved) but doesn’t look like those websites are linked to from clinicaltrials.gov so often have to google with trial names or keywords.
Also, the NIH/National Cancer Institute (NIH and National Library of Medicine developed and maintains clinicaltrials.gov) has a live chat with information specialists on clinical trials, they are available 12 hours a day to live chat and might help with the question: https://livehelp.cancer.gov/app/chat/chat_launch
I know NIH has Dr. Rosenberg that has been a pioneer in this and his office can see more patients now that they have partnered with pharma: https://irp.nih.gov/pi/steven-rosenberg
Even though you may not want to travel over here, might not hurt to email or get more information: https://ccr.cancer.gov/Surgery-Branch/Immunotherapy-Clinic-Application and here is the contact email, someone might help with: https://www.cancer.gov/contact/email-us they will put resources together for you. https://www.cancer.gov/contact
As with every trial, there can be extensive inclusion/exclusion criteria. Some of the exclusion criteria can have upper age limit, just make sure to check. I saw some of Dr. Rosenberg’s trials exclude after 70 years of age, but each trial has it’s own exclusions.
The doctor my husband sees at MD Anderson, Dr. Amaria, is actually doing a Phase I TIL trial: https://www.mdanderson.org/patients-family/search-results.html?q=Tumor%20Infiltrating&searchType=clinical%20trials#filter|diseases:Metastatic%20Melanoma,filter|enrollment_status:Enrolling
I’ll let you know as I hear back from people if they have any ideas on best ways to reach out.
Many hugs, thinking about your mom. she has a wonderful daughter who is advocating on her behalf 🙂
Jackie -
- January 18, 2020 at 2:17 pm
Also, i think this has been discussed on board, but just calling the department that the study is located in or PI is located out of at the institution, someone who answers can usually point you to the right person to start the process of getting information about potentially screening and enrolling. -
- January 24, 2020 at 3:00 pm
Thank you so much my dear, this is super helpful, I never feel alone when I am on this board, you are all awesome.Meanwhile we just finished our chemo sessions for this week and it is way less scary than I thought it would be, quite a relief, I hope it brings some benefit.
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