PROMISE Study: Registry of PCa Genetics and Outcomes

My hospital asked me to participate in this and I did. If future generations don’t need to worry about prostate cancer then this is a no-brainer to give them a better chance.

Seems I looked at this before. The one thing I didn't like about it is they can share results and identifying information with anyone.

Did you get meaningful results that they were able to use for your treatment?

One even better thing that I got out of the promise study,

They sent me a map marked with all of the countries my genetic study showed my family originated from. In my case it was 100% Europe, but all over Europe.

If you have prostate cancer and live in the United States, you can get an hereditary blood test for free and find out where your ancestors came from.

I didn’t get the map until a couple years after the initial blood test, I bet they do it quicker for people now.

This is the privacy policy posted in the FAQ section of the Promise Study website. I was satisfied with it. In addition, I believe any risk is outweighed by the knowledge, understanding and potential new therapies researchers hope to achieve through our participation.

"How will the PROMISE study protect data privacy?
Your Data: The PROMISE Study is committed to your data security. Our partners are leaders in research and data sciences. Every item of data and physical access point is secured for our participants' privacy and protection. From the blood draws at Quest Diagnostics labs to data warehousing at The Broad Institute, your information will be sent to us, and maintained by us, with the highest standards of security and confidentiality.

Our Study Reports: Our research is looking for trends among groups of people with similar characteristics and biomarkers. Your name and identifying information will always be kept private. We will never share study reports that provide personal details about any specific individual.

We do not share your data for any reason with anyone outside this study. You will not receive marketing materials of any kind. "

In the end, we must each do our own cost/benefit analysis.

Signed up today even though I’ve completed treatment.

Does insurance cover this? Do we get updates on new insights?

There is no cost to study participants. Here is the relevant text from the Promise Registry FAQ;
PROMISE is completely free for patients. There is no cost for the at-home DNA test, genetic counselor appointment, and the newsletter updates.

In addition to the newsletter updates, Promise has an annual live streamed webinar with the opportunity to ask questions.

Prostate Cancer PROMISE has a YouTube channel. Videos include general information, testimonials from participants who have benefited and past annual webinars. https://youtube.com/@prostatecancerpromise46?si=vXvP3aXKLHbBVYH-

What we have been talking about is the fact that if you live in the United States And you have prostate cancer then you can get the hereditary genetic test for free from
http://Prostatecancerpromise.org
Don’t say you want your doctor involved when signing up for it. If you do that they won’t send you the kit until they speak to your doctor. After the test a geneticist will call you about the results.

While I was writing this @dailyeffort answered it. I edited this after the fact.