u/Rotoroa

I’m currently the primary caregiver for someone with glioblastoma. I’m looking for a patient facing “CRM” that would help me track multiple opportunities (clinical) trials. Organizations and contacts are related to the research entities that are performing clinical trials.

Interactions are primarily with emails, but voice and especially meeting transcription are extremely important to document inclusion, exclusion, or follow-ups for required testing.

The goal is not increasing sales, but extending life.

Any thoughts to something that might fit the bill, or is this something that I need to vibe code using Claude?

GBM, wild type. Unmethylated. We’re about 45 days postop and 15 days into chemo and radiation. We have low expectations for the post RT MRI.

We’re actively looking at clinical trials to which we can apply now to avoid any delays once we get the first MRI results.

Has anyone found a magic bullet to get a clinical trial site investigator to actually reply to emails or phone calls?

I feel like they are probably inundated with desperate unqualified patients. Do they cope by ignoring inquiries?

Has anyone found a matchmaking service that can authoritatively examine the LO’s medical records, then have the credibility and authority to submit an application for the trial?

We’ve had some responsiveness from Ivy Brain Tumor Center and Massive Bio. But I can’t help but think there are others.

The current oncologist is very frank. She will help us find clinical trials but only if her hospital is the organizer or participant. If the clinical trial is in another hospital, we are on our own. That seems grossly unfair and downright cruel.

Curious to see how other people are managing the clinical trial process so they don’t get excluded due to institutional lethargy or out of network bias.

Like the title says, we have two W3600 indoor routers. I’d like to provide outdoor coverage for the backyard + some wireless cameras. I don’t need IPv7. Looking to pick up something cheap and used from eBay. Any suggestions?
Edit: this is a remote connection so no Ethernet. PoE is not really possible. The new node is only to extend existing coverage.

I’m the primary caregiver for a newly diagnosed GBM patient. Given that so many promising clinical trials are focused on immunotherapy, I’m convinced there’s a mind-body connection to helping fight this disease.

To that end, I’m looking for a watch or listen list for any movies TV shows or music that maintains your strength, optimism and “glass-half-full” attitude to “fight, fight, fight”

Some of my ideas for movies: Seabiscuit, Slumdog Millionaire, Unbroken, Rock, The Martian, Life is Beautiful, The Impossible, Touching the Void, Shawshank Redemption.

How about Music, songs or artists?

My theory is denial and indignation can be a powerful immunotherapy.