https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7 Please paste your response from the "Final Decision" Section of your case study document. To add a post, click the "+" button at the bottom right. Make sure to add your name! en-us 2021-10-13 18:11:48 UTC 2021-10-18 18:27:25 UTC hello@padlet.com https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1821427396 I believe that Kim and Todd should not use the treatment at this time. Based on the case study, there is not enough accurate data about the potential short term and long term risks of the treatment. Since the treatment has never been used on a patient with the disease it is supposed to treat, this leads me to especially pause and wonder whether it would even be effective at all. Specifically, healthy cells were injected into people with healthy cells and they experienced no side effects. However the purpose of the treatment is to inject healthy cells into people with unhealthy cells, meaning we don’t know how a person with DMD’s body would react to such treatment. Finally, Dr. Hidi is not a credible medical professional, he is a researcher who has been involved in a lot of controversy. The consistent way that Henrietta was trying to rush a decision from Kim made me feel uneasy, as if there is something wrong with the treatment. This is because if Dr. Hidi was reliable and truly confident in his procedures, there wouldn’t be as much urgency to get an answer from Kim regarding such a large decision.]]> 2021-10-16 21:04:27 UTC https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1821427396 https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1821468444 I do not think Kim and Todd should go forth with the treatment without exploring other options or treatments for this disorder first, for example the Crispr Cas9. Secondly, the person conducting the trial is not a medically licenced doctor, instead a researcher. Dr. Hindi may be a highly qualified researcher, however that does not mean that he knows how to work with children especially ones with DND. Furthermore the treatment has only been done on rats with nerve disorders and never on humans with muscular dystrophy.,  I think that it is a tough decision to make as it is impacting their children's livelihood, however I feel that with Mark and Johnny in mind it is in their best interest to abstain from this trial and look for other options.   ]]> 2021-10-16 22:36:37 UTC https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1821468444 https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1821559265 I do not think that Kim and Todd should place their kids in the trial. The treatment they would receive seems to be made to treat nerve degeneration, not muscular dystrophy. It concerns me that the patients would not be receiving a medicine for their specific disease. Also, Dr. Hidi is a researcher not a medical doctor, and is most likely out of practice when it comes to interacting with patients. The kids’ mental and emotional health must be taken into account when deciding whether or not to place them in the trial. The parents and kids’ medical teams should research different treatment options instead of placing the kids into the trial. ]]> 2021-10-17 02:01:18 UTC https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1821559265 https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1821578082 2021-10-17 02:33:16 UTC https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1821578082 https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1821710489 I would lean towards advising Kim and Todd to go through with this treatment, but to take their time making the decision and consult their children. It has been tried on animals with nerve disorders as well as healthy people, but never on anything with muscular dystrophy or on humans with any nerve disorder. For this reason, as well as Dr. Hidi’s underwhelming credentials & surrounding controversy as well as the short timeline given to make the decision I’d advise them to hold off on the treatment. However, since most people with Duchenne muscular dystrophy die in their twenties after a slow, painful battle, I think Kim, Todd, Mark, and Johnny should weigh the risks themselves. Unfortunately Mark and Johnny likely don’t have a very extensive timeline remaining and since Duchenne is a progressive disease their quality of life would decrease daily. They could consider waiting until things get really bad, but if they are able to take their time coming to a decision, that would be ideal. Their timeline is long enough to observe Dr. Hidi’s trial II and potentially join his trial III if trial II is successful. ]]> 2021-10-17 06:03:03 UTC https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1821710489 mattiaskeaunui2 https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1821743626 Kim and Todd should not do this procedure. Dr. Hidi has not provided enough information regarding the efficacy of the DMD for this to be an educated decision. First, the treatment is not directly related to the immediate concern of the child's illness. Johnny should first receive attention for his cold before undergoing any significant changes to his body unless those changes would aid in treatment or reduce complications. Secondly, the mouse models were inaccurate as they did not effectively test treatment against DMD, but rather a different muscular condition. It’s important that these trials get sufficient review, which, it appears did not as it is a major shortcoming (unless relationship was strongly proved elsewhere). Next, Dr. Hindi is not a medical expert and it does not state whether or not he has gotten approval from one. His proposal stirred up controversy in the scientific community, indicating that there is no consensus on whether or not the experiments were even set up in an accurate way. The statement from Henrietta that it is just a political move is not enough to disregard this skepticism. Finally, the family has not consulted with their physician and therefore should not make any sudden decisions.]]> 2021-10-17 06:52:51 UTC https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1821743626 https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1822599644 I do not believe that Kim and Todd should choose to put their sons through this treatment. There is no research on how the treatment will affect muscular dystrophy patients and Mark and Johnny would be the only ones in the 2nd phase that have muscular dystrophy rather than a degenerative nerve disorder. They may consult their children, but I would not advise them to let their children choose, given they are too young to make such a decision. Perhaps the skepticism from onlookers is only motivated by politics, but it is still justified. I would advise Kim and Todd to wait until there has at least been some research on the treatment’s effect on patients with muscular dystrophy. There hasn’t even been research on patients with degenerative nerve disorders yet, which is what the research was on in mice. There is no evidence yet that there would be no negative side effects on humans with muscular dystrophy. Also, the family should consult with their children’s primary physician, or DMD specialists, because Dr. Hidi is not a medical doctor. For these reasons, I would advise Kim and Todd not to go through with the treatment. ]]> 2021-10-17 23:04:41 UTC https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1822599644 https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1822607165 I think that Kim and Todd should not have their sons be the first ones with muscular dystrophy to go through this treatment. There is not enough research on the treatment and how it will effect those with muscular dystrophy. Dr. Hidi has not provide any data with what the risk are for injecting healthy muscle cells into the muscles of what could happen if the immune system rejects the healthy cells. On top of that, because their sons are sick right now, doing the treatment now could lead to even greater problems because their immune systems are weakened. As a parent your ultimate goal is the health and safety of your children and because neither of those are a guarantee with this treatment the best option is to not go forward with it. Plus there is also always the future so if the treatment is done and is proven to be effective and safe then Kim and Todd can consider it for their sons however right now it seems to be very risky.

]]> 2021-10-17 23:15:12 UTC https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1822607165 https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1822616561 I think Kim and Todd should not put their sons in the trial. There needs to be more research about what will happen to kids with muscle dystrophy, because at the moment there is no research at all and so the parents don’t know what could happen. Dr. Hidi is not a real medical doctor and so I think that there would be someone more trustworthy to have treated their kids but it should not be Dr. Hidi. No one knows what the impacts or side effects will be for the kids and so it’s not worth a shot. Children are not replaceable and so if something were to go wrongly it would negatively affect the family and hurt the parents.]]> 2021-10-17 23:26:55 UTC https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1822616561 https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1822660573 I believe that Kim and Todd should not follow through with this treatment. It is important to weigh other possible treatments before committing to this Phase II study. Given the fact that Dr. Hidi is involved in research and not a medical practice, there are added risks in participating in this study. It would be better to test this on mice whose primary issue is muscle degeneration, rather than nerve degeneration. Although nerves and muscles are related, there are gene therapy treatments for Duchenne muscular dystrophy that specifically work to restore the production of the protein dystrophin. These have proven to be much more successful in stimulating muscle growth or stopping the degeneration in muscles. For example, there is a treatment using CRISPR-Cas9, which is a gene-editing technology, and recently students have been able to stop the progression of Duchenne muscular dystrophy in animal and human cells. Understanding that this disease impacts the very x and y chromosomes that make up a person’s genetics is important so that one understands what the most impactful treatment would be. This is a potentially life-threatening decision, and from the given information about Dr. Hidi’s study, this option does not seem to be worth the risk. ]]> 2021-10-18 00:09:36 UTC https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1822660573 https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1823270071 I think that Kim and Todd should go for it. It doesn’t seem like there are a whole lot of other experimental trials going on for the treatment of DMD, so the Davis children are just going to be moving through life without any improvement on their muscular dystrophy. If the trial is safe, and by the book, then I think it would be in the children’s best interest to go ahead. Although Dr. Hidi may be motivated by other factors, at the end of the day they want the trial to be a success because otherwise, no one wins. You could almost argue that Dr. Hidi being a full-time researcher is beneficial because they would understand DMD on a cellular level, which is where the disease originates. The trial seems like it could be a success and worth participating in, especially if the worst case scenario is the children continuing their life with their anticipated progression of muscular dystrophy.]]> 2021-10-18 05:30:46 UTC https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1823270071 https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1823279284 I believe that  Kim and Todd should not put their sons through the treatment. While it has been tested on animals with nerve disorders, it has never been tested on patients with muscular dystrophy. Additionally, there is an overwhelming amount of controversy surrounding Dr.Hidi. Dr. Hidi is a research scientist and not a medical doctor. Dr.Hidi seems desperate to put the kids through the experiment and rush a decision. Dr.Hidi doesn’t have enough credibility and there is no information on the short and long-term effects that the injected myoblasts could have. I think they should hold back for a while and wait for the experiment to progress rather than having their sons be the first test subjects.]]> 2021-10-18 05:37:32 UTC https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1823279284 https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1823372314 Unless the symptoms of Mark and Johnny are severe currently and they don’t have more than 3 years left of life expectancy, then I think they should not undergo this treatment. I think that if the kids are already on the verge of dying and this is somewhat of a last hoorah so to speak, then it would be acceptable to take the treatment. I also think if the kid is extraordinarily unhappy with his life and cannot keep living the way he is then he should be able to get the treatment. Besides those 2 extreme options, the kids should not take the treatment. There simply isn’t enough reliability in the doctor or enough knowledge on the trials/phase to risk their kids' lives potentially. Yes the kids already are going to have short lives, but why make them even shorter in hopes of prolonging them. They should focus more on cherishing the time that they have with them. There are also steroids that people can take to help with muscle deterioration, which could be a safer alternative. I think if there was more credibility and Dr. Hidi was backed by the CDC and other doctors, then the family should go for it, but there just isn’t enough evidence shown for why they should choose the treatment.]]> 2021-10-18 06:41:01 UTC https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1823372314 https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1823383220 Kim and Todd should not follow through with this treatment. It is not the safest option for Johnny and Mark. To ensure that their children only receive the most credible and safest treatments, they need to wait for another option or more research to be published. Dr. Hidi’s research is not credible or trustworthy enough to immediately say “yes” to. It is not certain that it will be 100% successful for the children and they will be “cured” with the injection. Because Johnny and Mark are minors, I do not think they should take part in the experiment. Although the decision should be discussed with the children (and their opinion should be included in the final decision making process), their decision making skills may not be as advanced or thorough as the parents. Injecting a foreign substance into their weak bodies may create more harm than good. Later on, if more solutions are published or research further proves that this is the safest and successful option, the decision can be revisited, but for now, they should not receive this treatment. ]]> 2021-10-18 06:48:03 UTC https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1823383220 https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1823387330 I believe that Kim and Todd shouldn’t go forward with this treatment. I think they should take their time and come up with a decision as a family instead of rushing in with doubts and little background information. At the moment, there are many reasons that point to the uncredibility of Dr. Hidis treatment plan. First, Dr. Hidi is not a medical practioner, but a research scientist, thus his goals for his research to be successful and Kim’s and Todd’s hope for their sons condition to get better aren’t properly aligned. Dr.Hidi is also problematic within the research science community since his research isn’t actually similar to what he claims it is. The research he did was on mice that had another genetic muscular disease, not DMD. If Kim and Todd go through with the procedure the lives of their sons could be put at risk since the effects of his treatment were never tried on actual humans with DMD. Since DMD shortens the boys life span, I think that its in Kim and Todds best interest to wait until there’s been an experimental trial that proves the credibility of Dr. Hidis treatment plan and then allow their sons to receive treatment as soon as possible.]]> 2021-10-18 06:50:56 UTC https://padlet.com/kconcepcion5/9de7y4uzqxn1z7b7/wish/1823387330