ALS Credibility Prediction Software--Please Share Treatment Experiences

[swalker]

Thanks for that Steve. I'm still interested in your technical recommendations for the project, though we are somewhat constrained, I would like to make it as useful as possible.

I have a passion for helping folks grow and develop in this field. I am glad to help in any way I can.

I encourage you to pay very close attention to what Laurie has written. I agree with her assessment.

But, I know you have a senior project to do and it may not be practical to shift gears at this point. Regardless of whether you do or not, I think you could benefit from what I will write here.

As some background on me, I have spent a lot of time writing code in FORTRAN, BASIC, C, C++, Java, and C#. I have personally authored millions of lines of code in my career. I have also served as an executive in the software industry for over 30 years, rising to the position of President and CEO of my last company. I still serve on an advisory board of that company, though I am unable to work due to my disease. I have hired many interns, new college grads, and experienced professionals throughout my career and have always enjoyed my role as a mentor. I mention that background so that you may have some perspective on where I am coming from with my advice.

First, be clear on your objective(s). Write it (them) down. Is it to learn? Is it to get a passing grade? Is it to get the best grade in the class? Is it to convince your professor that you are the best of the best? I did not apply for my first job out of college. A professor recommended me for the position. He did that because I always set out with the objective of being the best of the best. Believe me, there is a shortage of talent in the market and those who exhibit talent will be sought out by those who are willing to pay for that talent.

Second, establish your requirements. You can use a variety of tools to manage the requirements (from JIRA to a piece of paper). For a project of your scope I would often use Excel. The important thing is the requirements, not the tool. Make sure there are no contradictory requirements. Make sure the requirements are concisely and precisely worded. There should be no ambiguity. Be careful to keep the project scope small enough so that it can be implemented in the time you have with the resources available.

Third, design before you build. It is tempting to jump right in and start building key pieces of your system before you know your objective, requirements, and design. This is a rookie mistake and I would expect someone working on a senior project to make it (because you are rookies). You can get well ahead of the curve by following a disciplined approach and delaying implementation until you know what it is that you are building. That way you increase the odds of building it once (by getting it right the first time).

Fourth, set up the development environment for your team. This can be done in parallel with establishing the requirements and design, though there are some requirements and design decisions that could impact the development environment you use. Be sure to use a collaborative CM tool (such as SVN) for your code, documents, etc. I enjoy using Eclipse with Maven, but I have been a part of building amazing software without them. Be sure to set up a unit test capability within the development environment and don't forget to set up an integration environment as well. You should have fully-automated unit and integration test frameworks established.

Fifth, implement your design. Be sure to write thorough unit tests for each class. Not doing comprehensive unit tests is another rookie mistake I would expect your team to be tempted to make.

Iterate toward completion. Integrate incremental chunks of software as they are developed. Be sure nightly builds with full regression testing is performed. I find integration is eased when each team member is required to run the full test suite on their checkout before they commit any changes to the repository.

Don't forget to write documentation needed for your system and commit this documentation to your repository.

Finally, I like to layer agile over all this. I like the SCRUM discipline and believe that working in sprints is a great way to manage projects. It can really fall apart on larger projects, but is an excellent choice for a project of your size.

Note that I have not said anything about the problem you intend to solve or the algorithms you might employ to solve it. I think that needs to be up to you and your team to develop.

Good luck. My bandwidth is quite limited, but I will be glad help as I can.

Steve

 

[KW1234]

Hi Markus from a fellow Oregonian.

Having worked in the tech field for over 30 years I consider myself pretty astute as identifying the bunk from the science. I have to agree though with David. Judging the integrity of the treatment or practioner by the website is next to impossible. What I personally do is send a list of questions and links to my neurologist a week before my clinic to discuss what I have found at my clinic and I trust them to advise.

For example, there is a group in Thailand doing stem cell injections for ALS. There site has video of people claiming reversals. However there is only one "doctor" in this clinic and his bio doesn't state where he studied, but his claim to fame is that he "reads alot".

On the other hand, there is a private clinic in Florida that while their website is not that impressive, that team is well respected by doctors I know working with regenerative therapies.

If you haven't finalized your project but are looking for a project to help ALS patients, I would suggest looking at the nerve conduction and EMG test procedures. There are some amazing new sensors out there that with the right algorithms could make a huge impact in reducing or eliminating the discomfort with these tests.

 

[gooseberry]

KW has some great points....as well as everyone else. I would add that to use an algorithm to evaluate treatment would be very difficult. ALS is a very individual disease. Presentation, progression, what helps each person varies. This forum uses that collective knowledge to try and help our loved ones or to spark a new idea that would help.

Now, if as KW said, you were looking at emg machines, predictive values etc, you actually have a measurable and quanitifable tool.

 

[AKNate]

I am a web designer, i know a lot about "judging a website by it's cover" - it's impossible to do. Sure, i make assumptions when i browse on the credibility of a site just by the design because i am paid to judge that and re-create it better. However my mother still thinks she has won a million dollars just because a flashing ad on a site told her so, she also thinks the stem cell therapy in China will cure my husband.

One example that has always stuck in my mind is a case study on the design of the Craig's List website - people have been trying to redesign that site for years and it never works because everyone is used to it looking the way it does and it functions well in that format. If i had to judge on pure aesthetics, i would say it is a dodgy site... but in reality we all know it isn't. Design is subjective.

Have a watch about 40mins in to this video where doctors show a few scam websites and they give tips on what to look out for: Ask the Expert

 

[markuswoltjer]

Thanks for your input, but again, I have faith in my professors, graduate student advisers, and the client that I'm not being misled down a useless path. There is value to whatever happens with this project. I've dedicated hundreds of hours and will continue to do so.

Does anyone have feedback on both medications and alternative treatments? I'd like some concrete opinions to use as a basis for further research. Thanks!

 

[affected]

Hey Marcus, we have a search function at the top of this forum that works really well. You could research all you want here, then ask specific questions if needed.

Many of our PALS are nearly fully paralysed, and all of our CALS are exhausted. Please do feel free to help yourself to the thousands of threads here though. I am sure you will find a lot of really useful information that we are very pleased to share with you.

Good luck with your research and thanks for what you are doing.

 

[markuswoltjer]

Thanks for that, I'll be sure to do that as we focus in on the labeling process.

 

[KW1234]

Markus, you can go on Patients Like Me to see what people with ALS are using for medications and supplements. There are ratings there for effectiveness, side effects, and feedback as to why people stopped.