Join us for Part 2 of this two-part series on Clinical Trials from the Patient Perspective. This time we hear from the experts who have solutions to the issues raised in Part 1. We continue to explore how research processes were impacted by Covid 19 and the race to find vaccines and treatments. Spoiler Alert – there are some Covid silver linings for those of us looking for change in MBC research. Co-hosts Jim Kremens, Lisa Laudico, and Sarah Mann, speak with experts Susan Colen of BreastCancerTrials.org, Deb Collyer of PAIR, Dr. Neal Fischbach of Yale New Haven Health, bioethicist Jill Manning of Mass General Brigham, Dr. Corrie Painter of Count Me In and the Broad Institute, Kristin Schneeman of Faster Cures and the Milken Institute along with MBC Patient Advocates, Christine Hodgdon of GRASP & Storm Riders Network and Lianne Kraemer.

Mentioned in this Episode

Find clinical trials for MBC at Metastatic Breast Cancer Trial Search and check out Metastatic Trial Talk for related information and resources. Both of these are part of BreastCancerTrials.org, follow them on X @bctrials.
Read more on the FDA and the Reagan Udall Foundation announcement on the Covid-19 Evidence Accelerator.
The National Center for Advancing Translational Sciences (NCATS) — one of 27 Institutes and Centers at the National Institutes of Health (NIH) — was established to transform the translational process so that new treatments and cures for disease can be delivered to patients faster.
Faster Cures at Milken Institute. Follow Milken on X
You can also find clinical trial information at Christine Hodgdon’s Storm Riders website. Christine has a two-fold mission - 1) to provide the most up-to-date scientifically accurate information about breast cancer and its treatments, and 2) to distill this information into a digestible format that is easy to understand.
Join the Facebook Group MBC Trials and Innovation
What is the FDA’s Patient-Focused Drug Development? Find out here. And read more about Compassionate Use/Expanded Access from the FDA. The American Cancer Society has a good article on Compassionate Use.
Learn about guidelines (as of 2020) for clinical trial eligibility for brain metastasis. ASCO details several FDA changes here.
MBC Alliance: The Marina Kaplan Project (The Breast Cancer Brain Metastasis Initiative)
MBC Connect

Meet the Guests of this Episode

Lianne Kraemer

Lianne is on the MBC Alliance committee for The Breast Cancer Brain Metastasis Initiative (The Marina Kaplan Project).

Why the Women Most Likely to Die of Breast Cancer Have Gotten the Least Attention

Christine Hodgdon

Visit GRASP or follow on twitter. Christine is #HereAllYear talking about How Clinical Trials Can Treat Metastatic Breast Cancer.
Breast Cancer Survivor’s Journey from “What Did I Do Wrong” to “What Can I Do Now?”

Deb Collyar

Director, PAIR (Patient Advocates in Research)
What's Being Done to Make Clinical Trials More Accessible?

Susan Colen

Director, Metastatic Trial Search
Breastcancertrials.org

Dr. Neal Fischbach

Assistant Professor of Clinical Medicine at Yale School of Medicine. Follow YaleMed on Twitter

Kristin Schneeman

Director of Faster Cures at Milken Institute. Follow Milken on Twitter

TRAIN -the Research Acceleration and Innovation Network

Jill Manning

Bioethicist and Assistant Director of the Mass General Brigham Institutional Review Board

Dr. Corrie Painter

Associate Director of Operations and Scientific Outreach for the Broad Cancer Program

Here is a list of organizations and individuals to follow on Twitter. Thanks to Christine Hodgdon and Julia Maues, founders of GRASP, for compiling and sharing this with all of us.

Organizations/Initiatives

Doctors/Researchers

Advocates

Media (Podcasts, magazines)

Conferences

Trial-related

@abreastcancer

@AdvocateCollab

@Angeldisguise_

@ASCO

@ASCOPres

@Breastcancerorg

@CancerAdvocacy

@chrysalisinit

@ciitizen

@ConquerCancerFd

@curetwistedpink

@GRASPtweets

@LivingBeyondBC

@LobularBCA

@MBC_Project

@mbcalliance

@MBCNbuzz

@metavivor

@NCIDirector

@OncoAlert

@ProjectLifeMBC

@rethinktweet

@SHAREing

@sistersnetwork

@SU2Cscience

@the_rightdose

@thebreastofus

@tigerlilycares

@touchbbca

@ABhealer108

@aftimosp

@AileenIlianaPhD

@AlanaWelm

@amykpatel

@aszim13

@awolff

@ayshakhoury

@benhopark

@CareyAnders1

@cittelly

@DanielleKrolMD

@Dr_RShatsky

@DrAttai

@DrBOvermoyer

@DrDebuTripathy

@drdonsdizon

@DrEricWiner

@DrGattiMays

@DrHBurstein

@drjennifergao

@DrJuliaBeaver

@DrRBarroso

@drsarahsam

@DrSGraff

@DrSusanLove

@DrWinkfield

@E_de_Azambuja

@elmayermd

@EMittendorfMD

@EnriqueSoto8

@ErikaHamilton9

@FAndreMD

@FilipaLynce

@gary_lyman

@GeorgeSledge51

@GhajarLab

@hmcarthur

@hoperugo

@jamienholloway

@JennGuerriero

@JenniShengMD

@JenRicher3

@jesusanampa

@jrgralow

@KalinskyKevin

@kevinpunie

@lab_bcm

@maryam_lustberg

@MCristofanill

@MridulaGeorgeMD

@naborala

@ndenduluri1

@NeNe_LaShaun

@NicoleKuderer

@Nikhilwagle

@nlinmd

@oesterreichs

@Otto_DFCI

@PTarantinoMD

@Prof_Riggins

@RitaNandaMD

@SKabrajiMD

@stolaney1

@StoverLab

@TarahBallinger

@tmprowell

@VeredStearns

@weoncologists

@YoungStrongDFCI

@abcdiagnosis

@AMJohnston1315

@barbarasegarra

@bobriter

@BraveBeauty26

@Bronxborn409

@ChefGeib

@christeeny513

@coffeemommy

@cormerod

@corrie_painter

@debsetu

@double_whammied

@ESchattner

@HillStirSci

@IBCResearch

@itsnot_pink

@itsthebunk

@jamilkali

@JaniceTNBCmets

@JersiBaker

@JillHoldren

@KDRichardson924

@LesleyKailani

@lianne_kraemer

@LLaudico

@LPseattle

@Maimah

@malefitness

@marissadt28

@Martha__Carlson

@MichelleTregear

@MyBreastYrsAhd

@MyStyleMatters2

@NancysPoint

@paspears88

@pink4the

@raalbany

@RickiDOVE

@sandisues

@Sharon4ACure

@stage4kelly

@stales

@Stickit2Stage4

@swaggsheila1

@TerlisaFights

@tperrybrown

@3BlackDocs

@ourmbclife

@MarciALandsmann

@OncLive

@AACR

@MetastasisRS

@MetastaticOdds

@myESMO

@SABCSSanAntonio

@BCTrials

@eaonc

@NCICancerTrials

@SWOG

No one should face MBC alone.
Whether you have a diagnosis yourself, or you're a friend, family member or caregiver of someone with a diagnosis, we're here to lend support, give information, share experiences, and to lift you up every time you need it. Research has proven that having the support we need during our most challenging times is paramount to honing coping skills and striving for wellness. Our supportive network is made of people just like you, who DO know what it's like, who HAVE been there, who CAN help.

Clinical Trials: The Patient Perspective Part 2