PROMPT Study Research Genetic testing

cp418
cp418 Member Posts: 7,079
edited September 2015 in Clinical Trials, Research News, Podcasts, and Study Results

https://promptinfo.squarespace.com/mission/

Since the inception of the registry on September 21, 2014, we have accrued over 300 participants!

Currently, we are partnered with 5 commercial genetic laboratories (Ambry, GeneDx, Myriad, Pathway Genomics, and Quest Diagnostics), who are distributing materials about PROMPT to eligible participants. In addition, we have met with doctors and genetic counselors from more than 20 institutions who are educating their patients and staff about PROMPT. One of our big goals over the next several months is to get our PROMPT study participants more involved. We are creating a task force for participants who would like to be more actively involved in things like outreach and education, data collection, and participant communications. If you would like to learn more about this effort or other ways to help us build the PROMPT community, please contact us at medprompt@mskcc.org. As a PROMPT participant we also want to be sure you know that we have an active informational website that you can visit at any time at promptstudy.info. Over the next several weeks we'll be adding even more content to this site so check back often for updates. If you are active in social media and want quick updates regarding PROMPT we encourage you to "like" our facebook page at facebook.com/prompt.study and to follow us on Twitter at @promptstudy.

Finally, over the coming months we'll be launching Phase II of PROMPT, which will be an expansion of the registry, and we will be inviting everyone enrolled in PROMPT to join. As part of Phase II participants will complete additional questionnaires and will be invited to provide us with a DNA sample that we can use for research. We will also ask participants to invite some of their family members to enroll in PROMPT. If you have any questions about Phase II now please feel free to contact us at medprompt@mskcc.org.

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Comments

  • vlnrph
    vlnrph Member Posts: 1,632
    edited January 2015

    Thanx for highlighting this consortium cp418. When I learned about it last year and started a thread in the High Risk Forum, the mods were kind enough to pin the post at the top of that page. Mayo, Dana Farber, Penn and Sloan Kettering are all involved in analyzing pooled data from the new generation of broadly based panel tests. The information we provide them will be used well.

    Anyone who was told they don't have "the gene" but does have any family history of breast and/or ovarian cancer should revisit their genetic counselor and inquire about further investigation. With the competition between labs out there, cost is much less than in the past and insurance companies are now more cooperative in coverage determination. It's cheaper to prevent malignancies than treat them!

    Many mutations other than the classic BRCA 1 & 2 are known to be deleterious. What is still unclear however is the steps to take once a particular defect is identified. The PROMPT study will help in sorting out these questions in addition to paving the way for those who come after us to have the best treatment guidelines possible.

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited September 2015

    I'm bumping this for those who haven't seen it. I received results of extended gene testing that showed a variant of unknown significance on one gene (MLH1), and an invitation to enroll in this study (which I did).

    They're now up to 1,000 participants!

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