Finding a Gastroparesis Specialist

Posted in: Pharmaceuticals ♦ Sunday, January 19th, 2014, 1:52 am ♦ 46 Comments

In my first FAQ podcast of 2014, I talked extensively about the pieces of a comprehensive gastroparesis management plan and all of the things that we can do every single day to improve our symptoms and quality of life.

Though much of an effective plan comes down to self-care, proper diagnosis and appropriate medical treatment are equally important. Which brings me to another very frequently asked question:

“Where do I find a good doctor?”

I get lots of emails about this and it’s something that I really struggled with myself. I literally traveled around the country looking for a motility doc who was knowledgeable, compassionate, and open to working with an educated, proactive “patient.”

The good news is those kinds of docs are out there and with your help, I’ve put together a list of over 100 GPer-recommended specialists throughout the US and Europe. You’ll find the list below. My hope is that it makes building this part of your management plan a little easier.

If you’d like guidance and support to help you build and implement the rest of your personalized management plan, be sure to check out the Living (Well!) with Gastroparesis Group Program starting March 3rd. Today is the last day to save $50 on registration and receive the bonus Q&A phone call!

Please note: I am not personally recommending or endorsing any of these physicians. This list is based solely on feedback received from other GPers. Just like everything else with gastroparesis, experiences will vary depending on circumstances, needs, goals, and preferences. The perfect doctor for someone else may not be the perfect doctor for you. Consider this list a starting point for research and don’t be afraid to continue looking if one physician isn’t a good fit for you.

If you’d like to recommend a gastroenterologist or other healthcare provider specializing in the care of those with gastroparesis, please send an email to lwwgp@crystalsaltrelli.com with the name, location, and any feedback you’d like to share.

GPer Recommended Doctors (updated January 2014)

As I continue to receive feedback and recommendations, I will periodically update this list. Hopefully it will cover all 50 states in the near future. In the meantime, here are two additional resources that may also be helpful to those looking for a specialist:

  • Enterra Therapy Directory of Surgeons (This can be a roundabout way to find a GI doctor who is familiar with gastroparesis. The listings in this directory are surgeons who implant the gastric neurostimator not GI doctors specializign in gastroparesis. However, you may be able to call their offices and ask which GI doctor(s) in your are refer patients to them for the neurostimulator.)

This post was originally published in 2011 but has been completely updated as of January 2014. 

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46 Responses to “Finding a Gastroparesis Specialist”

  1. [...] This post was mentioned on Twitter by Crystal,
    G-PACT. G-PACT said: Patients are often the best advisers in
    choosing a good, knowledgeable, and caring physician. Crystal
    Saltrelli… http://fb.me/EpWyvPWt [...]

  2. Posted by: Libby
    January 29th, 2011 at 8:32 pm

    Great list, Crystal! The only thing I would mention is that Dr. Patterson is now at Swedish Medical Center, too, not at Virginia Mason anymore.

  3. Posted by: Kelly Dugger
    January 30th, 2011 at 1:18 am

    We use Dr. Christopher Jolley at Shands at the University
    of Florida in Gainesville, FL. He is a Pedicatric Gastoenterologist
    that goes above and beyond with his patients. We have found him to
    be extremely compassionate with our daughter. Dr. Jolley also does
    work with the Gastric Stimulator and will refer out if
    needed.

  4. Posted by: Crystal
    January 30th, 2011 at 1:42 am

    Thanks, Libby! I’ll keep track of any updates and repost
    the info.

  5. Posted by: Crystal
    January 30th, 2011 at 1:46 am

    Thanks, Kelly! So sorry that your daughter is dealing with GP, but I’m glad you’ve found a good doc. I’ll add Dr. Jolley to the updated list.

    I hope others share their recommendations, as well!

  6. Posted by: Aliza
    January 30th, 2011 at 2:18 pm

    Crystal, The doctors at the UNC Center for Functional GI
    and Motility Disorders, Particularly Nicolas Shaheen and Yehuda
    Ringel, are excellent in treating gastroparesis and chronic
    intestinal pseudo-obstruction. They go above and beyond and are
    extremely compassionate, have great bedside manners, will spend
    extreme amounts of time with their patients to get to the bottom of
    problems, and are willing to try creative treatments. I’m sorry
    that I missed answering your survey. Aliza

  7. Posted by: Pia miller
    February 28th, 2011 at 8:55 pm

    I am a five year survivor of pancreatic cancer. I have had
    surgery followed by chemotherapy and radiation in 2006. There was
    reoccurrence of a tumor outside the stomach wall in 2009 which was
    followed by more chemotherapy. I had a 5 month break and it
    reoccured in 2010. I became the first patient with p.c. To have
    proton therapy and so far things look promising. I have a pet/scan
    again next week. But now I have been diagnosed with gastoparesis
    and have lost 12 pounds in two months. I also have two duodenal
    stents and bile stents that get changed every 3 months. The gastro
    dr. Has suggested a j tube but I have a history of infection and
    don’t want to go that route. I can drink ensure and I can have some
    soft foods but right now it’s trial and error. I really need some
    suggestions. An upper G.I. Showed a very tight duodenum but no
    other obstructions. The pain I get comes in spasms, like a
    tightening of my esophagus and belching. But I can go several days
    with no pain. Is there a nutritionalist that can help me or a
    motility doctor? Looking forward to your response. I feel greatful
    this does not appear to be cancer related. Pia

  8. Posted by: selene
    May 19th, 2011 at 3:03 am

    Hello everyone, i am currently living in Oklahoma cause the the Army sent us here. I have not seen a GI to adjust the settings on my stimulator for about 3yrs not. 1, cause Tricare doesn’t want to pay and 2. The closest one is Dallas. Just wondering if anyone know of a good GI in the OKC area that i can check out. It looks like if things finally go our way, the Army will be sending us to Ft. Bliss(El Paso,Tx) and there are 2 dr’s that do stimulators there and that would be awesome. My team of drs i had there before moving to OK finally had my body in control or the best it could get. Well, thank you for advance to anyone that answers this:)

  9. Posted by: Debra
    November 8th, 2011 at 7:06 pm

    My daughter is 16 years old and has been diagnosed with gastroparesis. Has anyone had experience with a pediatric GI doctor?

  10. Posted by: Crystal
    November 11th, 2011 at 12:25 pm

    Hi, Debra. Not sure where you live, but here are three of the best pediatric GI motility specialists that I’ve heard of:

    Dr. Carlo DiLorenzo at Nationwide Children’s Hospital in Columbus, OH
    Dr. Alex Rodriquez at Children’s Hospital in Boston
    Dr. Alex Flores at Floating Hospital for Children at Tufts in Boston

    Hope that helps!

    Warmly,
    Crystal

  11. Posted by: Karen
    November 23rd, 2011 at 4:20 pm

    My friend has been diagnosed with gastroparthesis and I see from these postings there are several pediatric specialists but does anyone know of a specialist for adults?

  12. Posted by: Crystal
    November 23rd, 2011 at 6:59 pm

    Karen, there are actually many more adult motility specialists than pediatric ones (not that there are many of either!). The lists that I linked to in this post are primarily doctors for adults, so be sure to check those out. If you let us know where you’re located, I might be able to make a recommendation.

  13. Posted by: Wendy Ebright
    September 5th, 2012 at 8:22 pm

    Read your books, Thank you.
    Do you know any specialists in FL?
    Preferably South West.
    Thanks; Wendy

  14. Posted by: karen
    October 14th, 2012 at 10:58 am

    Does anyone know of a doctor who specializes in the gastric stimulator in or around east Tennessee?

  15. Posted by: Crystal
    October 14th, 2012 at 7:10 pm

    Hi, Karen. You can do a search on the Medtronic website to see which surgeons in your area perform the surgery. If you call their office, they will likely to be able to tell you which GI doc in the area refers patients for the procedure. http://www.medtronic.com/physicianlocator/googleMaps/advancedSearch?therapy=7

    Warmly,
    Crystal

  16. Posted by: Wendy Ebright
    October 15th, 2012 at 4:51 pm

    I have not found any specialists in South West Fl.
    Any advise???

  17. Posted by: Armanda
    November 8th, 2012 at 9:48 pm

    I’m not sure how far in Southwest FL you are looking, but I went to Shands Hospital in Gainsville today. They spent a lot of time with my husband and I explaining GP and our options, along with ordering several tests to rule out other things. It is a 2.5 hour drive for us, but its worth it if I’m going to get proper care. I wish you the best!

  18. Posted by: Ashlee H
    November 13th, 2012 at 11:52 am

    I am desperately looking for a new GI Doctor. I have been seen by Borland-Groover Clinic here in Jacksonville, FL since I first started my path to diagnosis. However, they are not motility specialists and my case far exceeds their area of expertise. They can no longer help me, and at 24 have told me they have already exhausted all of their options with me and are pretty much wiping their hands with me. I am my own advocate and fight for myself each and every day, but I need someone to back me up and instead of me being the only one to support me I need the advice and options from a supporting doctor. I am willing to drive, and go anywhere. My health is far too important to me. If anyone knows of a good motility specialists in FL, kindly let me know. From one GP’er to another, thank you.

  19. Posted by: Armanda
    November 13th, 2012 at 3:51 pm

    Ashlee, I recently went to Shands hospital in Gainesville, FL. I’ve only gone once but they are running all tests on me to be sure we are dealing with GP (my local GI did the one hour emptying scan) and They spent a lot of time with me. I can’t say whether I like them or not since I’ve only been once. Isn’t there a Mayo Clinic in Jacksonville? If not I think there is a new Shands up there. Hope you get the help you need. God Bless.

  20. Posted by: Debi
    November 22nd, 2012 at 9:58 pm

    I was recently diagnosed with GP (last week) & I just want to make sure I have the best Dr to deal with my situation. I live in Virginia Beach, Va. I have tried several ways to do a search for GI/GP specialists but they give me everything but what I want. I appreciate any help I can get!! My Dr. gave me the diagnosis and the main info on GP and them told me to search on the internet if there was anything I wanted to know.

  21. Posted by: Amy
    January 5th, 2013 at 6:15 pm

    Do you know of any specialists in NY ?

  22. Posted by: Deborah
    May 7th, 2013 at 1:30 pm

    I have Gp and started seeing a doctor in Charlottesville, VA which is hour and 1/2 from my home which is in Richmond, VA! I did like the Dr. Mann, but he just wants to stuff you full of pills, tells you lose weight and exercise? Really, I am already sick and can’t eat many days, lose weight? It comes with the disease! Already!

    Any way, I need to find a better caring GP specialist here in Richmond, VA and the only one I have been sent to at St. Mary’s hospital, is very uncaring and I can’t stand him! So, if anyone in this area know of other docs in this area, please send me an email! I do not have health insurance, but I can go to local hospitals! I have a care card with Bon Secours and I have the indigent insurance through MCV!

  23. Posted by: Armanda
    May 7th, 2013 at 2:53 pm

    Does anyone know of any GI or specialists for GP in Honolulu, HI? Looks like the military will be sending us there and I don’t want to lose the assignment because of my GP, but also want to make sure I will receive proper treatment while living there. Thanks in Advance!

  24. Posted by: Amy kehn
    September 30th, 2013 at 3:38 pm

    Gastroparesis specialist in MN!

  25. Posted by: Allison
    October 7th, 2013 at 9:39 am

    My 33 year old brother has advanced gastroparesis and is in so much pain. His GI doctor and Endocrinologist say they “don’t prescribe pain meds” and the GI doctor does not seem to understand his gastroparesis and severe symptoms. I am so worried and it is heartwrenching to watch. He lives just outside of Austin, Texas but we are willing to drive far if needed. Does anyone know of a gastroparesis specialist anywhere in Central Texas, Austin or San Antonio? Or anywhere in Texas? Please respond.

  26. Posted by: Elizabeth Neill
    November 18th, 2013 at 7:44 pm

    Allison, I have GP and live in Austin. We should connect and share information! Feel free to email me at libbyneill@yahoo.com. I am seeing Richard McCallum in January, and he’s located in El Paso.

  27. Posted by: Emily Ricotta
    January 20th, 2014 at 2:58 pm

    Hi! I saw Dr. Linda Lee from Johns Hopkins. She is the one who recognized that I had GP and ran me through the proper tests. She made me feel really comfortable about everything, and reassured me that I wasn’t a hypochondriac or being needy because I felt like everything was wrong with me. I would highly, highly, highly recommend both her and her practice. She also runs the Center for Integrative Medicine and Digestive Center (, where they have a nutritionist, a massage therapist, and an acupuncturist (which I found really helped me actually! I participated in a clinical trial for acupuncture and GP with her). I would probably still be suffering if it wasn’t for her and her team.

    Another quick note, my GP symptoms have actually almost completely resolved. It turns out I am allergic to the food additive Xanthan Gum (and the other gums too, actually). Once I figured that out and cut them from my diet, my digestive system practically restarted and I can eat everything but lettuce again! And I had been down to a pretty much liquid diet. So, since it’s rare most people haven’t heard of this allergy, but it might be something for people to consider and I wanted to throw it out there.

  28. Posted by: Joanne Hutchins
    January 20th, 2014 at 3:12 pm

    I wanted to comment on your list of 100+……Dr. Eric D. Weston, Bellair/Clearwater Florida is my current GI doctor and he is fabulous!!!! He prescribed my miracle drug Domperidone. I had tried several other medications prior and had no success and bad reactions. I suffered, as many of us do, for several years until I was able to get the right combination of mediation, rest, and nutrition. I am currently symptom free and medication free. WHOO HOO!!!!!!!!!!! I follow a strict food plan – NO FLOUR, NO SUGAR, weighed and measured meals that include fruits, grains, veggies, and protein. Thank you for all that you do for us GPers!!!!!!!!!!!!!!!!!!!!!!! :)

  29. Posted by: loreta
    January 20th, 2014 at 3:27 pm

    Hello, Crystal. Thank you for the list
    Its unforunate tha you don’t provide any Canadian doctors.

  30. Posted by: Crystal
    January 20th, 2014 at 3:49 pm

    Loretta, hopefully some of your fellow Canadians will chime in with recommendations! I’ve posted everything I’ve received.

  31. Posted by: Karen Levy
    January 20th, 2014 at 4:00 pm

    Crystal,
    As always this is such good information. I have searched and searched the Atlanta area and missed one of the names you have on your list.
    I wanted to let you know, also that Dr. Edward Lin is a surgeon who performs a procedure to make the stomach smaller which then increases gastric emptying by putting pressure on the stomach when it is full. He and the surgery come highly recommended by my GI doctor. And I believe that Dr. Lin is the author of this surgery.

  32. Posted by: melissa culp
    January 20th, 2014 at 5:38 pm

    hi Crystal, great list of doctors to have for reference, with Dr. Metz. to up date his status, he is a motility specialist and does both botox and domperidome, the check list for him were not marked, his is in the process of learning about the gastic stim, along with Dr.Harbison now being with UPenn, they are going to work as a team soon.., just whated to make sure everyone know about UPenn doctors too, I have a dream team there now! YAY! no more going to Temple! :)

  33. Posted by: Don Bonsall
    January 20th, 2014 at 5:49 pm

    Hi Crystal – Dr. Thomas Nowak is no longer in Anderson, IN. He has moved to IU Health in Indianapolis.

  34. Posted by: Cindy
    January 20th, 2014 at 5:54 pm

    I highly recommend my gastroenterologist Dr Gregory Schnell in Kansas City, MO. He is learning about gastroparesis, and when I told him about you, he said he would check your site out. He is very compassionate and takes all the time needed for answering my questions at every visit.

  35. Posted by: Crystal
    January 20th, 2014 at 6:14 pm

    Thanks, Don! We will correct that.

  36. Posted by: Leslie
    January 20th, 2014 at 6:32 pm

    Hi Crystal, What a brilliant idea to put out this list. Thank you very much.

    I wanted to let you know that Dr. Michael Gavin in Albuquerque, NM does prescribe Domperidone. I’ve been on it for about 18 months and we are now considering weening me off and see what happens. I’ve been eating “outside the box” and having no problems.

  37. Posted by: Kathy
    January 21st, 2014 at 5:47 am

    Hi Crystal, I wanted to add an Australian Dr to your list. Dr Ben Devereaux is based in Brisbane at the Holy Spirit Hospital. He was the Dr to confirm my GP in 2007 and continues to support me to date. I have since had a gastric pacer implanted in July 2013 on his recommendation after a lot of support and attempts at different remedies and am now eating well and living life! Dr Devereaux is professional and supportive.

  38. Posted by: Patricia
    January 21st, 2014 at 7:44 am

    Wonderful list. Glad to see Dr. John O’Brien Clarke at Johns Hopkins there. You can check yes for gastric stimulator, botox and domperidone. My daughter has received all of these treatments from him. All the nice things your chart says about him are true! He is a wonderful doctor.

  39. Posted by: Rose Szpak
    January 22nd, 2014 at 2:32 pm

    Thank you, very informative list!

  40. Posted by: Lauren
    January 22nd, 2014 at 4:28 pm

    The doctors at the Surgone Foregut Institute (http://www.sofisite.com/) in Denver, Colorado are very, very good.

  41. Posted by: Jane Hall
    January 23rd, 2014 at 4:10 pm

    Crystal,
    Dr. Thomas Abell (Inventor of the neurostimulator) is at Louisville, KY. I just had mine replaced there in Aug. of 2013. he’s THE BEST. Google him, and you’ll see why -he’s brilliant, but, the most humble , soft spoken, and caring dr. I’ve ever met. and I’ve been through many, many doctors the past 20 years.
    Also, Dr. Christopher Lahr, Jackson, MS,at University Hospital, Dr. David Adams, MUSC, Charleston, SC. also implant the stimulator.
    I’ve had 3 stimulators, so feel free to ask me anything, anyone!! Don’t stop trying to find help even if you have to drive for hours or fly to get there. I live in SC.

  42. Posted by: Donna Zegalia
    January 27th, 2014 at 4:43 pm

    HI Crystal, thanks for all you do for those of us with GP. I have diabetic GP. And the best gastroenterologist in my area, refused to see me anymore because I wouldn’t do botox. Its not covered and I haven’t heard any great testimonials. I am now seeing a nurse practitioner who could care how much I suffer. I live in PA, an hour north of Philadelphia. I am told most of the doctors in Phila. do botox. I went to Hershey medical and they did the egg test and I came in at 83% so they didn’t want to see me. But, when I was diagnosed I was at 72%. I still have chronic constipation and diarrhea and can hardly eat anything. I also have fibromyalgia. When are doctors going to take this seriously. Thanks for listening

  43. Posted by: Gayle
    February 6th, 2014 at 10:03 pm

    I would like to recommend Dr. John Wiley, UofM, Ann Arbor, MI. Specializes in gastroparesis, very smart, great bed side manner, spent a hour with my husband who has GP, discussed all treatment options, does Botox. Highly recommend for anyone looking for a specialist in MI.

  44. Posted by: Cindy Young
    February 22nd, 2014 at 8:46 am

    I highly recommend Dr. Douglas Rex of IU Medical Center in Indianapolis (and IUMG Carmel). I’ve been going to him for years. He is not only extremely knowledge, he genuinely cares about his patients and attempts to do all he can to help. He diagnosed me years ago with appropriate testing when the previous three gastroenterologists I sought help from brushed me off. Dr. Rex is thorough, up to date on information, and extremely personable. He cares about his patients to such an extent that he even came in on a Sunday to see my daughter, who was in significant pain from a possible colon problem and had been released from the ER of another hospital. Not only is Dr. Rex an outstanding physician, he is a kind and considerate man. I have never left his office feeling discouraged. That says a lot.

  45. Posted by: Amy Rose
    April 14th, 2014 at 7:49 pm

    Hell,

    My name is Am. I am 26 years young. I live in NYC and am at the best time in my life to be alive! Im a graphic designer I moved to the big city around 4 years ago to pursue my big dreams and theyre finally happening. Since the age of 16 I had developed an eating disorder and was declared officially anorexic by the age of 18 by my primary care dr at the time. I was in denial regarding the entire thing as I didnt realize what was happening in front of the mirror. By the time I did, I was 19, in college stressed out and turned bulimic. I kept all of this a secret for a very very long time to everyine. My own family didnt know and doesnt. I can successfully say after deciding to wake up one morning and see a GI doctor because my stomach was a mess I plyed it off as ” oh, maybe i have acid reflux” not telling my GI doctor the truth…. I just wasnt ready yet to recover. I was scoped, had ulcer and irritation to my esophagus and was put on Prevaid, no good, protonix, no good, acifix, no good, finally Nexium and it worked … this was back in 2006.

    I would routinely see my GI docotr every 3 to 6 months to follow up and things were fine even though i was still damaging my body. I decided to wake , again, 2009 and decided I didnt want to destroy my body, I wanted to live I wanted to be happy I wanted to be ok with myself. Since that day I have been [sober] if you will… so thats almost 5 years I’ve been doing good and not relapsing , however, I didnt seek any nutritionist or help, I just slowly adjusted my eating habits, retrained my brain to think properly again, and be ok with what I saw in the mirror.

    I am writing here because in 2011 my acid reflux symptoms became so bad, that I was about to admit myself to the ER in NYC. The only reason I had not done that was because I would have sat there waiting forever and probably not gotten seen. So, I called my GI Dr in CT (where Im originally from) and told him my symptoms were worse, the Nexium doesnt really help, even if I double the dose and he said that the next step would be surgery at that point. I was fully ready for it, I have been in pain so much that its dulling sometimes and it doesnt phase me anymore when everyone else thinks I should see a Doctor. I had to take time out of work for testing and pre op exams just so I could become a candidate for a Fundoplycation.

    I took barium xray tests, endoscopies, the worst thing in my life a motility test ( but I got through it) and finally….the stomach emptying test. All of the paperwork was in and the night before my surgery was scheduled, the surgeon called me up, told me the surgery was cancelled and to see my GI Dr as to why. My heart sank, I was devastated. For once, I thought that my problems were over , hour away from being over and I could be a normal person.
    I saw my GI Dr the next day and he sat me down and explained that I failed the stomach emptying test, significantly. Because I failed, having surgery on my stomach would have made my conditions and symptoms worse. He then continued to tell me that my severe acid reflux was a SYMPTOM of Gastroparesis. For 5 years a GI misdiagnosed me for a disease that he told me he “didnt know much about”. I asked him then if he could refer me to someone or a specialist in this since it seem so rare and was told he didnt know anyone , which I thought funny because I live in NYC, millions of people there must be at least one that knows. I couldnt even get that information. I was then told ” You have made it his far in life with the symptoms you have.. theyre not easy to manage, they won’t go away, and you’ll probably be living with this for the rest of your life, so get used to it”. I left the office, sat in my car for about 45 minutes and just cried.
    Every couple of months I’ll get the ambition and courage to try and find a Dr that specializes in this but am never successful. I found one recently in NYC but my insurance isnt accepted, and I cant afford to even go for an appointment.

    Im a very strong willed person. I do not give up easy. However, I feel as though I quit smoking cigarettes 10 years ago, and now Im diagnosed with lung cancer. Like, what was the point? Its too late the damage is done.

    I cant eat 6 times a day small meals because simply dont have the funds for that much groceries and I physically cant eat.. my brain doesnt tell my stomach Im hungry eat … for almost half a day sometimes. I would literally have to make a timer for myself. This is no way to live. Sometimes I get bent out of shape and the pain is unbearable to the point where I cant hide it from my face anymore.
    I found this website, and Im thankful for being able to see just how many others are affected by this disease.

    I just feel like there really is no end, what if I want children sometime in my future? Would I even be able to do that?
    The pain is so bad sometimes I cant even get out of bed and go to work.

    I am not interested in Botox injections , I am not interested in a pacemaker. At this point in my life I would rather have a hollistic solution as I refuse to be dependent on something or more pills as Im fed up. I was hoping maybe there is some time of massage therapy? Or something? .. I really dont know anymore… all I know is as cliche as it sounds

    I want my life back. I want to wake up and not think about pain, or if Im losing too much weight because this disease keeps food trapped inside me for a long time.

    I wish there was a simply answer and I know that there is not.

    But I just hope that someone finds this and understands that maybe there are other ways to cope with this other than medication and devices.

    You’re all beautiful people in my eyes, and after reading entries from this site, its what gets me through the bad days with gastroparesis.

    Amy Rose

  46. Posted by: Kim
    June 30th, 2014 at 1:11 pm

    Hello! I was diagnosed with gastroparesis 6 months ago after YEARS of illness. My wonderful doctor prescribed Domperidone and it changed my life! Unfortunately, he will no longer prescribe it being it is not approved by the FDA and there seems to be some restrictions with the practice he is now working with. I am currently looking for a doctor (preferably in the New York area, but willing to travel if need be!) who is comfortable prescribing this medication. I feel terribly ill and have found Domperidone to be the only medication that works without any of those nasty side effects. Any recommendations?

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