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Thread: Researching for stem cell clinics

  1. #1
    Join Date
    May 2007
    Posts
    12,901
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    Default Researching for stem cell clinics

    I get lots of e-mails and private messages asking me what clinics I think are good clinics. Everyone really has at their disposal information to do this research themselves. The internet has made it possible to access everything from scientific publications to a person's personal experience blog.

    In my enthusiasm, I have sometimes not confronted warning signs that I should have. I hope this list will help others. Most people who visit this forum are ill or know someone who is and therefore are vulnerable to taking risks and paying out a lot of money for unproven therapies. It's time to demand more from companies and doctors who are offering stem cell treatment. I am truly disappointed in the lack of evidence that is coming our way to show us that these treatments are of some value. There is only a handful of companies that are accessible to us that are participating in the ICMS accreditation program (that makes their work transparent and that's a good thing for patients) or are FDA compliant and doing their own studies under Investigational Review Boards or other agencies that may act the same in offshore locations. Patients need to ask why. Are the outcomes so far short of the promises they make, that they don't want us to know? Are they not wanting the burden of the extra cost it takes to track patients pre and post treatment? Is it simply all about the money? If they can recruit large numbers of us by simply hiring a few good salesmen or making great promises on a website, are they thinking, why go the extra mile?

    I suggest making a list of questions up in advance that you want to ask when you contact a company or doctor about stem cell treatment. When contacting several, ask the same questions so you can compare apples to apples.

    I found several online sites that offered suggestions and I have added some of my own as well. If anyone has other suggestions, please feel free to add to these. Pick and choose from the list below when doing your research. These questions are merely suggestions.

    Also, don't forget other resources that you can check. In the U.S. for instance, you can contact the FDA to ask about any complaints or describe the therapy being offered and ask if it is compliant with FDA regulations. You can also contact the Better Business Bureau and state medical boards to check on the doctor's credentials. When researching on the internet, don't just type in the doctor's name and the clinic name. Get creative when digging. Look for scams, license suspensions, names of others involved in the clinic besides the doctor(s). Offshore clinics present a more difficult task to research and that is why I suggest using the ICMS offshore guidelines. ICMS is a reliable source. They can also be used to verify U.S. clinics to see if they are in the accreditation program.



    1) Is the clinic treating multiple diseases? If so, are they all treated the same way?

    2) How long has the clinic been in business? Who owns it? If it is a U.S. company, are you able to verify the information with the Secretary of State in the state that it is incorporated in?

    3) How many patients have been treated with your condition and over what time period (years, months)?

    4) Does the website make claims and use words such as: not risky, technology that no one else has, high success rates, decades of research, published data, FDA approved, revolutionary, first of its kind, cure? If so, how are these claims backed up?

    5) How do they handle emergencies? Is the treatment done in a clinic or a hospital?

    6) How well trained is the doctor(s)? How long has he been treating patients using the stem cell therapy that you are inquiring about? What are his/her credentials? Is there just one doctor or are there specialists as well? Are all the doctors medical doctors?

    7) Is the staff well trained? How long have they worked with the doctor/clinic?

    8) What are the pre treatment requirements? Are they covered in the cost of the treatment quote? What are the post treatment requirements? Does the company have a plan to follow up with patients who have been treated? If so, how long will this follow up be? What do they do with any data they collect? Can you have access to it?

    9) Does the clinic participate in ICMS or any other professional organizations?

    10) Can you speak with a doctor prior to committing to the treatment? Is this at no charge? Is he available after hours for emergencies?

    11) What is the source of the stem cells? If treatment is not done with your own stem cells, is there a certificate of purity you can have access to? If applicable, has the donor's blood been tested for infectious diseases?

    12) How is the treatment done? Is there a protocol that is followed? Can you have access to the protocol pre treatment? Is the method spelled out in the Informed Consent? Is an Informed Consent given to you prior to treatment and not handed to you when you walk in the clinic and may feel stressed and pressured to hurry and sign it?

    13) Does the cost seem excessive as compared to other clinics? Does it seem too low as compared to other clinics? If you have to have multiple treatments, can you afford to? Is there any discount for additional treatments and can you get this in writing? Are there additional costs not spelled out in the agreement (required testing, supplements, etc.)?

    14) If you are injured, can you be compensated? Are you asked to sign all of your rights away pre treatment? Are you required to sign a Confidentiality Agreement? Would this exclude you from discussing your treatment with your own doctor or an attorney if needed?

    15) Does the doctor work under an Investigational Review Board (IRB) or an Ethics Review Board (ERB)? If yes, is there proof of this?

    16) Has there been any published evidence that this type of stem cell therapy works for your condition? If so, where can it be found? Is the published work done on animals or humans or both? If there is no independent published information backed by medical or scientific evidence, how is the doctor/company backing their claims of efficacy?

    17) How many others have been treated at the clinic with the same condition you have? Can you speak with several of them? If you are the first or one of only a few, are you willing to take that risk? Would you subject your child to that risk?

    18) What is the refund policy?

    19) Can a patient visit the clinic prior to treatment?

    20) How do they count the stem cells? How do you know you are receiving millions or billions? Do they manipulate them or store them before they are infused? If so how and where?

    21) Is the time taken to explain to you in language you can understand how the procedure works and what the benefits of treatment might be for you or are you simply subjected to scientific and medical jargon that is difficult to understand?

    22) If the company uses testimonials, how long after treatment was the testimonial given? So many are highly charged and enthused after treatment. I have had some tell me within a few days how much better they were feeling. Some eagerly agree to testimonials within a few weeks of treatment only to find that the improvements have not lasted several months down the road.
    First treatment in 2007. Pioneering ever since.

    Barbara

  2. #2
    Join Date
    Apr 2014
    Location
    USA New Jersey
    Posts
    4

    Default Stem Cell treatment

    Quote Originally Posted by barbara View Post
    I get lots of e-mails and private messages asking me what clinics I think are good clinics. Everyone really has at their disposal information to do this research themselves. The internet has made it possible to access everything from scientific publications to a person's personal experience blog.

    In my enthusiasm, I have sometimes not confronted warning signs that I should have. I hope this list will help others. Most people who visit this forum are ill or know someone who is and therefore are vulnerable to taking risks and paying out a lot of money for unproven therapies. It's time to demand more from companies and doctors who are offering stem cell treatment. I am truly disappointed in the lack of evidence that is coming our way to show us that these treatments are of some value. There is only a handful of companies that are accessible to us that are participating in the ICMS accreditation program (that makes their work transparent and that's a good thing for patients) or are FDA compliant and doing their own studies under Investigational Review Boards or other agencies that may act the same in offshore locations. Patients need to ask why. Are the outcomes so far short of the promises they make, that they don't want us to know? Are they not wanting the burden of the extra cost it takes to track patients pre and post treatment? Is it simply all about the money? If they can recruit large numbers of us by simply hiring a few good salesmen or making great promises on a website, are they thinking, why go the extra mile?

    I suggest making a list of questions up in advance that you want to ask when you contact a company or doctor about stem cell treatment. When contacting several, ask the same questions so you can compare apples to apples.

    I found several online sites that offered suggestions and I have added some of my own as well. If anyone has other suggestions, please feel free to add to these. Pick and choose from the list below when doing your research. These questions are merely suggestions.

    Also, don't forget other resources that you can check. In the U.S. for instance, you can contact the FDA to ask about any complaints or describe the therapy being offered and ask if it is compliant with FDA regulations. You can also contact the Better Business Bureau and state medical boards to check on the doctor's credentials. When researching on the internet, don't just type in the doctor's name and the clinic name. Get creative when digging. Look for scams, license suspensions, names of others involved in the clinic besides the doctor(s). Offshore clinics present a more difficult task to research and that is why I suggest using the ICMS offshore guidelines. ICMS is a reliable source. They can also be used to verify U.S. clinics to see if they are in the accreditation program.



    1) Is the clinic treating multiple diseases? If so, are they all treated the same way?

    2) How long has the clinic been in business? Who owns it? If it is a U.S. company, are you able to verify the information with the Secretary of State in the state that it is incorporated in?

    3) How many patients have been treated with your condition and over what time period (years, months)?

    4) Does the website make claims and use words such as: not risky, technology that no one else has, high success rates, decades of research, published data, FDA approved, revolutionary, first of its kind, cure? If so, how are these claims backed up?

    5) How do they handle emergencies? Is the treatment done in a clinic or a hospital?

    6) How well trained is the doctor(s)? How long has he been treating patients using the stem cell therapy that you are inquiring about? What are his/her credentials? Is there just one doctor or are there specialists as well? Are all the doctors medical doctors?

    7) Is the staff well trained? How long have they worked with the doctor/clinic?

    8) What are the pre treatment requirements? Are they covered in the cost of the treatment quote? What are the post treatment requirements? Does the company have a plan to follow up with patients who have been treated? If so, how long will this follow up be? What do they do with any data they collect? Can you have access to it?

    9) Does the clinic participate in ICMS or any other professional organizations?

    10) Can you speak with a doctor prior to committing to the treatment? Is this at no charge? Is he available after hours for emergencies?

    11) What is the source of the stem cells? If treatment is not done with your own stem cells, is there a certificate of purity you can have access to? If applicable, has the donor's blood been tested for infectious diseases?

    12) How is the treatment done? Is there a protocol that is followed? Can you have access to the protocol pre treatment? Is the method spelled out in the Informed Consent? Is an Informed Consent given to you prior to treatment and not handed to you when you walk in the clinic and may feel stressed and pressured to hurry and sign it?

    13) Does the cost seem excessive as compared to other clinics? Does it seem too low as compared to other clinics? If you have to have multiple treatments, can you afford to? Is there any discount for additional treatments and can you get this in writing? Are there additional costs not spelled out in the agreement (required testing, supplements, etc.)?

    14) If you are injured, can you be compensated? Are you asked to sign all of your rights away pre treatment? Are you required to sign a Confidentiality Agreement? Would this exclude you from discussing your treatment with your own doctor or an attorney if needed?

    15) Does the doctor work under an Investigational Review Board (IRB) or an Ethics Review Board (ERB)? If yes, is there proof of this?

    16) Has there been any published evidence that this type of stem cell therapy works for your condition? If so, where can it be found? Is the published work done on animals or humans or both? If there is no independent published information backed by medical or scientific evidence, how is the doctor/company backing their claims of efficacy?

    17) How many others have been treated at the clinic with the same condition you have? Can you speak with several of them? If you are the first or one of only a few, are you willing to take that risk? Would you subject your child to that risk?

    18) What is the refund policy?

    19) Can a patient visit the clinic prior to treatment?

    20) How do they count the stem cells? How do you know you are receiving millions or billions? Do they manipulate them or store them before they are infused? If so how and where?

    21) Is the time taken to explain to you in language you can understand how the procedure works and what the benefits of treatment might be for you or are you simply subjected to scientific and medical jargon that is difficult to understand?

    22) If the company uses testimonials, how long after treatment was the testimonial given? So many are highly charged and enthused after treatment. I have had some tell me within a few days how much better they were feeling. Some eagerly agree to testimonials within a few weeks of treatment only to find that the improvements have not lasted several months down the road.
    Barbara- please if you would be so kind. I am interest in stem cell, But I really don't know what clinic is good. I have been looking into Lung Institute in Tampa, Florida? I am also interested in the new clinical trials with coils.This trial currently going on. What makes Regenerative Medicine Institute in Mexico different from US clinics

  3. #3
    Join Date
    May 2007
    Posts
    12,901
    Blog Entries
    5

    Default

    SunnyR - There have been some changes since I first posted the list back in 2011. For one, there are a lot more clinics offering stem cell treatment especially for lung disease. Another change is that ICMS no longer has its accreditation program although there is talk of possibly reviving it. Back in 2011, Regenerative Medicine Institute was participating in the program which took a lot of work and diligence to complete.

    If you have not read through the Ask the Doctor threads, I would recommend that you do, especially the more recent ones. The stem cell industry is a rapidly changing one, so some of the older threads may not have the most current information as concerns contact information, regulatory issues, etc.

    I have had treatment from Dr. Feinerman prior to his joining the Lung Institute. I was very pleased with the therapy I got there. I am currently in a study under an IRB with my own hometown doctor, Dr. Terry Grossman. He's featured in a special this Sunday evening on CNN. It's an installment of Morgan Spurlock’s (Supersize Me) documentary series “Inside Man” at 10 PM Eastern. I am not sure if he will be discussing stem cells, but I hope so.
    Both doctors used additional therapies in their protocols which is something I believe enhanced the stem cell treatments I got. I have never gotten long term results with just stem cell treatment alone. When checking on clinics ask if the protocol is strictly stem cells or if other treatments are also administered (glutathione, growth factors, cytokines, supplements, IV's, prp (platelet rich plasma), etc.).

    If you qualify for the clinical study for the coils, I cannot see that having the coils inserted would in the future, keep you from also getting stem cell therapy down the road in the hopes of gaining even further improvement. From what I've read about the coils, some patients feel almost instant improvement. Do you know if you meet the inclusion criteria for the clinical trial for the coils? If you don't, then that will eliminate that option.
    First treatment in 2007. Pioneering ever since.

    Barbara

  4. #4
    Join Date
    Apr 2014
    Location
    USA New Jersey
    Posts
    4

    Default stem cell

    Thank you. I am not sure if I qualify for the coil. I am in the process of making an appointment. But even if I am accepted there is no guarantee I will get the coil. They did tell me that after the study was over I would be able to get the coil.
    My health is getting worse and I am very concerned.

  5. #5
    Join Date
    May 2007
    Posts
    12,901
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    Default

    Is this the clinical trial you are talking about? http://www.stemcellpioneers.com/show...-Major-Surgery
    First treatment in 2007. Pioneering ever since.

    Barbara

  6. #6
    Join Date
    Apr 2014
    Location
    USA New Jersey
    Posts
    4

    Default coil

    yes, this is the study. I was told they are actively recruiting for this study.

  7. #7
    Join Date
    May 2007
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    Default

    Yes, I believe they are recruiting. I am not a big fan of placebo based clinical trials, but they are what they are. You would surely know almost immediately if you were in the placebo group. Like I said, I can't see any problem with doing both therapies especially if you got into the placebo group. Stem cell treatment is going to reduce inflammation for the most part. Couple that with having the coils and you could have some dramatic results.
    First treatment in 2007. Pioneering ever since.

    Barbara

  8. #8
    Join Date
    May 2007
    Location
    New Hampshire
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    Default

    Here is what I know about the coil trials

    • You have a 66% chance of getting the coils if you qualify
    • You must completed or currently attending a pulmonary rehab program in the past 6 months
    • You MUST have severe hyperinflation in your lungs
    • Most of the damage has to be in the upper lobes although I have read different articles where people received the coils in their lower lobes
    • You have to be able to complete a minimum of 600 feet in the 6-minute walk



    This is a paid trial meaning you actually get paid for participating. I believe the first payment is $200 and you receive payments for every visit up to a total of $2600.

    I will be heading to Beth Israel in Boston on April 29th to qualify. On that day I am scheduled to meet with a pulmonary doctor, complete a Pulmonary Function test and a 6 minute walk. Will update when I return.
    Still Pioneering
    Had UC treatment April 5th, 2007
    Had autologous treatment March 19, 2010
    Had bone marrow and adipose stem cell treatment (autologous) June 16, 2010

  9. #9

    Default

    Stem cells can be used in ES cell-based technology which reduces the risks associated with the development of transgenic mouse line by DNA pronuclear random integration.

  10. Default Stem Cell

    Stem cells are separated cells that are able to split and distinguish into a variety of specific cell types and red blood cells are made from special stem cells. Researchers are working on the cell because they can become so useful in treating diseases.

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