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Janet Freeman-Daily, MS, ENG Writer, Science Geek, Lung Cancer Patient February 19, 2015 Twitter: @JFreemanDaily blog: grayconnections.net
| Date post: | 16-Jul-2015 |
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Janet Freeman-Daily, MS, ENGWriter, Science Geek, Lung Cancer Patient
February 19, 2015
Twitter: @JFreemanDailyblog: grayconnections.net
Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 2
http://maryrobinettekowal.com/journal/jay-lake-genome-scarf/
Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 3
http://maryrobinettekowal.com/journal/jay-lake-genome-scarf/
http://www.youcaring.com/medical-fundraiser/sequence-a-science-fiction-writer/38705
My Lung Cancer Journey
© Janet Freeman-Daily 2015 -- @JFreemanDaily -- grayconnections.net 4
Stage 3aNSCLC
05/2011
5/2011 5/2012 5/2013 5/2014
© Janet Freeman-Daily 2015 -- @JFreemanDaily -- grayconnections.net 5
Stage 3aNSCLC
05/2011
Stage 3b/410/2011
Clinicians
My Lung Cancer Journey
chemo-rad
5/2011 5/2012 5/2013 5/2014
© Janet Freeman-Daily 2015 -- @JFreemanDaily -- grayconnections.net 6
Stage 3aNSCLC
05/2011
Stage 3b/410/2011
Metastatic09/2012
Clinicianschemo-rad chemo rad
My Lung Cancer Journey
5/2011 5/2012 5/2013 5/2014
© Janet Freeman-Daily 2015 -- @JFreemanDaily -- grayconnections.net 7
Stage 3aNSCLC
05/2011
Stage 3b/410/2011
Metastatic09/2012
Clinicianschemo-rad
Patient
chemo rad
EGFR, ALK neg
Submit slides for
gene panel
Request pathology
results
10-gene panel neg
Interact with online lung cancer community and follow research developments
My Lung Cancer Journey
© Janet Freeman-Daily 2015 -- @JFreemanDaily -- grayconnections.net 8
Stage 3aNSCLC
05/2011
Stage 3b/410/2011
Metastatic09/2012
Clinicianschemo-rad
Patient
chemo rad
clinical trial (crizotinib for ROS1 NSCLC)
EGFR, ALK neg
Submit slides for
gene panel
Request pathology
results
Visit U of Colorado Hospitalrequest ROS1/RET tests
enroll in clinical trial
ROS1pos
10-gene panel neg
travel to site, take meds, labs/scans, track SEs
Interact with online lung cancer community and follow research developments
My Lung Cancer Journey
I’m Alive Thanks to Precision Medicine… and Other Patients
© Janet Freeman-Daily 2015 -- @JFreemanDaily -- grayconnections.net 9
Stage 3aNSCLC
05/2011
Stage 3b/410/2011
Metastatic09/2012
Clinicians
No Evidence of Disease since 12/31/2012
chemo-rad
Patient
chemo rad
clinical trial (crizotinib for ROS1 NSCLC)
EGFR, ALK neg
Submit slides for
gene panel
Request pathology
results
Visit U of Colorado Hospitalrequest ROS1/RET tests
enroll in clinical trial
ROS1pos
10-gene panel neg
travel to site, take meds, labs/scans, track SEs
Interact online with lung cancer patients and follow research developments
Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 10
http://www.smartpatients.com/lung-cancer/trials
What is the purpose of a Clinical Trial?
EXPERIMENT TREATMENT & HOPE
©Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 11Image Credits: Microsoft Powerpoint clipart
For Clinicians, Researchers, Pharma, Industry:
For Patients:
The Life Raft Group: gastrointestinal stromal tumors (GIST) Patients began sharing Gleevec trial experiences online in 2000
In 2001, published review of Gleevec side effects from patient viewpoint
Maintains largest patient-provided clinical database in world, including GIST tissue, patient history, side effects, relapse rates
Initiated “Project D-Day” in 2010 to sequence GIST genome , conduct gene knockdown studies, screen drugs, validate research
Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 12http://liferaftgroup.org/
The new research model pioneered by the Life Raft Group is making it possible for patients and family members to contribute to clinical research for their diseases in unprecedented ways.
George Demetri, M.D., Medical Director, Center for Sarcoma and Bone Oncology at Dana-Farber Cancer Center
LeioMyoSarcomaDirect Research Foundation
Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 13http://www.lmsdr.org/stanfordu.php
Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 14http://dev.transparencyls.com/
ALCMIBiobank
Labs
• Online recruitment• Online consenting• Remote sample handling• Remote follow-up• Site coordination
ALCMI Project ManagerSite Coordinators
Clinicians
Genomics of Young Lung Cancer
Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 15
Genomics of Young Lung Cancer
0
10
20
30
40
50
60
Projected
Actual
Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 16
Patient Enrollment in Trial
Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 17
https://www.change.org/p/protect-patient-access-to-precision-medicine-tell-fda-to-withdraw-proposed-ldt-regulations
Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 18
http://www.ctti-clinicaltrials.org/home
Where to find epatients Research Advocacy Network
ePatient organizations -- Society for Participatory Medicine
Disease-specific advocacy organizations
ePatient advisory boards
Patient-centered conferences -- Stanford Medicine X
Healthcare chats on Twitter -- #LCSM, #HCLDR …
Patient blogs
Online patient forums and Facebook groups
Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 19
Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 20
Janet Freeman-Daily, MS, ENG
Writer, Science Geek, Lung Cancer PatientTwitter: @JFreemanDailyblog: grayconnections.net
Janet Freeman-Daily -- @JFreemanDaily -- grayconnections.net 21
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