Showing posts with label research. Show all posts
Showing posts with label research. Show all posts

Sunday, 12 March 2017

Advocating for Gynecologic Oncology Clinical Trials - #Trials4GynCancerNow

The SGO (Society of Gynecologic Oncology) is conducting their Annual Meeting March 12-15, 2017. You can follow research presented at the meeting by following the hashtag #SGOMtg on Twitter. Note that we'll discuss SGO Meeting highlights during our April 12th #gyncsm chat. 

During their annual meeting, SGO will be conducting a social media campaign to advocate for gynecologic cancer clinical trials. #gynscm is please to support this campaign and we hope you will join us.

There has been a steep decline in the number of clinical trials in gynecologic cancer since the restructuring of the NCI-sponsored cooperative groups in 2012.  Information about the campaign can be found in this SGO document.

You can join us as we support this campaign by tweeting the following starting on Monday, March 13th at 9:35amEST:
Women with #gyncancer deserve progress. Fund trials now @realDonaldTrump #Trials4GynCancerNow @SGO_org

Feel free to send additional tweets using #Trials4GynCancerNow to encourage increased funding of NCI trials. 

Thanks, 

Dee
#gyncsm Co-Founder 

Wednesday, 14 December 2016

Getting Involved in Research Advocacy - Dec 14th Chat

We ended this year of chats by discussing Research Advocacy. We were delighted to have Elda Railey (@RANAdvocate), Research Advocacy Network, join us as our guest. The Research Advocacy Network's mission is "to develop a network of advocates and researchers who influence cancer research-from initial concept to patient care delivery-through collaboration, education and mutual support." Among our forty-three participants were a number of cancer research advocates. You may read the transcript here and additional analytics may be found here.

Below is a sampling of the responses we received to our five topic questions.

T1: Beyond enrolling in clinical trials, what are some of the ways people can get involved with cancer research? 
RAN Slide of Opportunities for Research Advocates



T2: How can patients and advocates keep up with research? What resources are out there to help us better understand the science?







T3: What does being a "research advocate" involve? How has this role changed as overall patient influence has grown?








T4: How can people start to get involved with grant review, clinical trials design, research dissemination, and/or conferences?






T5: What are some tips when it comes to reaching out to Congress about cancer research? What has shown to be effective?





Remember if you are a patient or caregiver you can continue this conversation on the Smart Patients platform at https://www.smartpatients.com/gyncsm.


The next #gyncsm chat will be a joint chat with #mayacc on Wednesday, January 11 at 9pmET. Our topic will be "Young Adults: Life Following a Cancer Diagnosis."

Happy Holidays!
Happy New Year!


Dee
@gyncsm Co-Founder



RESOURCES

Research Advocacy Network : General Resources for research advocates
http://researchadvocacy.org/general-resources
http://researchadvocacy.org/advocate-institute

What is a Cancer Research Advocate via @CancerDotNet http://www.cancer.net/blog/2016-12/what-cancer-research-advocate

Resource | Being A Cancer Advocate via @CancerDotNet http://www.cancer.net/research-and-advocacy/patient-advocates/being-cancer-advocate 

@theNCI has a great Research Advocacy 101 video
https://www.cancer.gov/about-nci/organization/oar/research-advocacy/research-advocacy-101

8 Tips on Gaining Access to Journal Articles via @medivizor https://medivizor.com/blog/2014/12/18/8-tips-gaining-access-to-journal-articles/

scientist - survivor program offered by @AACR http://www.aacr.org/AdvocacyPolicy/SurvivorPatientAdvocacy/Pages/scientistharr;survivor-program___403E94.aspx#.WD83COErKi5

OCRFA Advocate Leader Program https://ocrfa.org/advocacy/advocate-leaders/
OCRFA Advocacy Action Alerts https://ocrfa.org/advocacy/how-you-can-help/

@NOCC_National calendar has events nationwide: https://t.co/wMkCaD09mb

PCORI peer reviewer http://www.sciencesupport.org/PCORIpeer/start/index.cfm
PCORI additional info:
http://www.pcori.org/research-results/research-dissemination-and-implementation
http://www.pcori.org/blog/how-cancer-survivors-make-difference-pcori

Sarcoma Clinical Trials http://www.curesarcoma.org/patient-resources/sarcoma-clinical-trials/

@GlobalGenes toolkits: https://globalgenes.org/toolkits/from-molecules-to-medicines-how-patients-can-share-their-voices-throughout-the-drug-development-process/introduction/
and https://globalgenes.org/toolkits/bringing-rare-disease-to-capitol-hill-advocating-for-your-cause/background-information/

Genetic Alliance Advocacy http://www.geneticalliance.org/advocacy

Welcome your new research partner: Patients https://blogs.biomedcentral.com/on-medicine/2016/12/09/welcome-your-new-research-partner-patients/

Former Rep. Gingrey's recent article on Ovarian Cancer Research http://thehill.com/blogs/congress-blog/healthcare/309680-with-no-screening-test-available-research-and-awareness-key-to

Rare Disease Week on Capitol Hill http://rareadvocates.org/rdw/

Guest column: Congress should support cancer research http://www.theadvocate.com/baton_rouge/opinion/article_3dc1fbf8-b00f-11e6-8127-9768bdfdcccd.html

@CureForward Webinar: Precision medicine and clinical trials for #ovariancancer. https://www.cureforward.com/norma-leah-ovarian-cancer-initiative/

https://clinicaltrials.gov/
https://ocrfa.org/patients/clinical-trials/

Article | Patients Attending Medical Conferences: What’s Happening? https://medivizor.com/blog/2015/05/21/patients-attending-medical-conferences-patients-included/

https://patientsincluded.org/conferences/

NCI: How You Can Help Medical Research: Donating Your Blood, Tissue, and Other Samples https://www.cancer.gov/publications/patient-education/help-research-donate-tissue
  
Research news sources: @HealthNewsRevu @medivizor @PubMedHealth @Medscape  @cancernetwrk @ascopost @cochraneconsumr
 
Other resources mentioned: @patientslikeme @smart_patients @researchmatch @cureforward @ResearchAmerica @UMR4NIH @ConquerCancerFd @RareAdvocates @EveryLifeOrg

Thursday, 8 December 2016

December Chat - Getting Involved in Research Advocacy (12/14)

In the past our community has chatted about advocating for yourself and others and about being a gyn cancer advocate. This month on Wednesday, December 14 at 9pmET (8pmCT/6pmPT) we would like to extend the advocacy topic to include how those impacted by a gynecologic cancer can become involved in cancer research and become a research advocate.

Our guest this month will be Elda Railey (@RANAdvocate) from Research Advocacy Network (RAN). You can read more about Elda, a founder of RAN, here.

We invite all those who are already research advocates and all those who want to learn about getting involved with research and becoming a research advocate to join the discussion, which will be guided by these topic questions:

T1: Beyond enrolling in clinical trials, what are some of the ways people can get involved with cancer research?

T2: How can patients and advocates keep up with research? What resources are out there to help us better understand the science?

T3: What does being a "research advocate" involve? How has this role changed as overall patient influence has grown?

T4: How can people start to get involved with grant review, clinical trials design, research dissemination, and/or conferences?

T5: What are some tips when it comes to reaching out to Congress about cancer research? What has shown to be effective?


In addition to the resources found on the Research Advocacy Network site you may also visit the AACR website's page on Becoming a Advocate for Medical Research.

We look forward to seeing you on the 14th for our final chat of 2016.

Dee and Christina
Co-founders #gyncsm Community

Sunday, 26 June 2016

Celebrating Cancer Hashtag Communities and a Moonshot

The #gyncsm community is pleased to be joining in the activities celebrating our cancer hashtag communities and the Moonshot Program. Many representatives of our hashtag communities have been invited to the Moonshot Summit in Washington, DC or one of the Regional Satellite Summits. We invite everyone in the gynecologic cancer community to join with survivors, advocates, researchers and others for one of the chats listed or to submit an idea to the Moonshot Program (link provided below). 

This coming week, the online cancer hashtag communities will be celebrating. Why, you ask? We have two good reasons.
  1. The Cancer Moonshot Summit happens Wednesday, June 29, in DC and in satellite locations all over the US (see DC agenda at bottom of this post). While several of our members will be attending, we all have the opportunity to provide input to the Cancer Moonshot (deadline July 1).
  2. The 5th Anniversary of the beginning of Breast Cancer Social Media (#BCSM) and the beginning of cancer hashtag communities on the web happens July 4!
Our celebration will take the form of several coordinated chats open to everyone, regardless of cancer type.

Mon 6/27:#BCSM Chat (use both #BCSM and #cancerchat hashtags) will host a cross-cancer chat at 9 PM Eastern Time about three of the Cancer Moonshot Working Group topics (check blog on #BCSM website for chat details):
--Expanding Clinical Trials
--Enhanced Data Sharing
--Precision Prevention and Early Detection
Ideas generated can be submitted online to the Cancer Moonshot.

Wed 6/29:Cancer Moonshot events in DC and satellite locations (see agenda for DC Summit below)

Wed 6/29:#Hcchat will conduct the official Moonshot chat on Twitter (use both #Hcchat and #Moonshot hashtags) at noon Eastern Time on the topic "Will the Moonshot lead to the death of cancer?" This chat applies to all types of cancers. Special guest will be Vincent T. DeVita, Jr, MD, who was head of the NCI during Nixon's Cancer Act and author of "The Death of Cancer."




Thu 6/30:#LCSM Chat (use both #LCSM and #cancerchat hashtags) will host a cross-cancer chat at 8 PM Eastern Time about the remaining four Cancer Moonshot Working Group topics (check blog on #LCSM Chat website for chat details):
--Cancer Immunology and Prevention
--Tumor Evolution and Progression
--Implementation Sciences
--Pediatric Cancer Ideas generated can be submitted online to the Cancer Moonshot.

Thu 6/30:Last day to submit Moonshot ideas at https://cancerresearchideas.cancer.gov/a/index

Sun 7/03:#BTSM Chat (use both #BTSM and #cancerchat hashtags) will host a cross-cancer chat at 9 PM Eastern Time about our hopes and dreams for cancer research and treatment in the future.

Mon 7/04:5th anniversary of #BCSM and cancer hashtag communities

Mon 7/04:#BCSM anniversary celebration chat at 9 PM Eastern (use both #BCSM and #cancerchat hashtags)

The cancer hashtag communities hope you"ll join us for some (or ALL) of these special events and help us celebrate! To learn more about the cancer hashtag communities, visit http://www.symplur.com/healthcare-hashtags/ontology/cancer/



  AGENDA FOR THE CANCER MOONSHOT SUMMIT IN WASHINGTON, DC Cancer Moonshot Summit Agenda 1 (CROPPED)
Cancer Moonshot Summit Agenda 2 (CROPPED)

















Original blog post appeared on lcsmchat.org site. 


Dee and Christina
Co-founder's #gyncsm Chat (est. 2013)

Wednesday, 8 June 2016

June 8, 2016: What's New in Gyn Cancer Research

Thirty-four #gyncsm community members chatted about What's New in Gyn Cancer Research.  Our discussion focused on research presented at the Society of Gynecologic Oncology Annual Meeting (#SGOmtg) held March 19-22 in San Diego, the American Association for Cancer Research Annual Meeting (#AACR16) held April 16-20 in New Orleans, and the American Society of Clinical Oncology Annual Meeting (#ASCO16) held June 3-7 in Chicago.

You may find the transcript here and the chat analytics here. 

We began our chat by remembering our friend and supporter of #gyncsm, Jody Schoger, #bcsm co-founder. She was an amazing advocate. 

Topic Questions / Sample Response Tweets: 

T1:Do you research new treatments and studies online? Do you follow scientific meetings like #SGOmtg, #AACR16 and #ASCO16? 

  • I participate in twitter to inform patients and families of key findings from meetings using #SGOMtg #ASCO16 #AACR16
  • A caution in keeping up with research is how long it can take for studies to lead to any change in practice guidelines
  • Plus I want to be prepared with what options I will have if I recur again
  • I find @ASCOPost emails useful.

T2:GOG 252 did not support a previous study which showed IP chemo benefit (tough treatment for many). How does this change things? 
  • #ASCO16 session on GOG252 Walker: Median PFS all three arms GOG252 similar
  • There is still a benefit for IP chemo - demonstrated in 3 large randomized trials We need to understand who benefits most
  • Yes, Dr Gourley mentioned 3 Pos studies(GOG 104,114,172), 1 neg(252)
  • I feel more confident telling patients that if they want the benefits of GOG172, we have to at least try the same regimen 
  • #ASCO16 session on GOG252 Mackay-“unresolved issues” 
T3:In the hot topics of immunotherapy, precision medicine, and genetics, which #SGOmtg/ #AACR16/ #ASCO16 research excited you? 
  • https://t.co/DfjMW5ZPwP adv endometrial cancer : everolimus, letrozole,metformin showed clinical benefit in ph 2study 
  • I'm very excited about the interest & research on hereditary cancers and how to use this to guide targeted therapy-new options! 
  • Pembrolizumab:well tolerated, showed antitumor activity pts w/ PD-L1+ adv cervical squamous cell cancer.https://t.co/P5KsDdtTUA
  • Precision medicine for Gyn disease is finally taking root. It not only bevucizumab anymore
  • Kurian: Genes mutations in #ovca article https://t.co/O1mgn5zqoc
  •  Liquid biopsies (look for circulating tumor DNA in blood) https://t.co/PUROem0e7N 4 screening and during treatment talked about 
  • There was a clear theme of trying to find out who are the responders to a given Rx - understanding the pts that benefit the most
T4: What studies reported at #ASCO16 in palliative care, survivorship, and psychosocial research could help gyn cancer survivors? 
  • The data on early involvement of palliative care should be able to be extrapolated to gyn cancer patients and caregivers
  • QOL may predict survival in recurrent #ovca @ASCOpost -https://t.co/te0NvFAkPJ 
  • Real studies on improving chemo induced. Neuropathy with PT
  • Qol: older long term #ovca survivors better QOL than younger https://t.co/OGKtr3t0oi
  • It was great to see presentations beyond standard chemo treatment. ASCO. It's not just about chemo
T5: As "patient-centered" research becomes more accepted, what do you see as the role of the patient in future cancer research?
  • Been great to see White House precision medicine efforts. workshop this week: Engaging participants as partners in research
  • Let's start with adding quality of life components to all studies.
  • Being more patient-centered means looking beyond overall survival endpoints. Also need patients in design of studies to reach.
  • This from #SGOmtg patient-centered research: Accepting treatment w/ Side Effects change as Goals Change https://t.co/xhY9Wg1FRn
  • Patients see so much in the practical side of clinical trials that trial designers don't think about.
  • I would love to see advocates on irb. And involved in trial design

Our next #gyncsm chat is on  Wednesday  July13th  at 9pmET when we will discuss Spirituality and Quality of Life with guest @MeredithGould of #hlthsp. We hope you can join us. 

Remember patients and caregivers are invited to continue our discussion on the Smart Patients platform at https://t.co/dFCf1Mcahw. 

See you next month!

Dee Sparacio
Co-founder #gyncsm Community and Chat

Resources:
@SGO_org Society of Gynecologic Oncology: #SGOmtg Abstracts and Late-breaking Abstracts https://t.co/vjzYlqOTC1

@AACR American Association for Cancer Research: #AACR16 Abstracts https://t.co/2sZ6G7QveL

@ASCO American Society of Clinical Oncology: #ASCO16 abstracts https://t.co/3vruaogIUV

"Roundup of #OvarianCancer Abstracts From #SGOmtg on Women’s Cancer" https://t.co/7z5UlcDx17 via @ascopost

@ocrfa statement on GOG 252 https://t.co/XTjyzfOpw9

key abstracts at #ASCO16 Gyn Onc at ASCO 2016: Ovarian Cancer https://t.co/t1krzp6ymx via @YouTube

Abstracts #ASCO16 Gyn Onc at ASCO 2016: Cervical Cancer https://t.co/780LCAOh72 via @YouTube

abstract review from #ASCO16 - Gyn Onc at ASCO 2016: Endometrial Cancer https://t.co/Dsh7AdyArv via @YouTube

exercise and neuropathy: https://t.co/LZwUSbWVAi

Engaging participants as partners in research - Workshop Storify https://t.co/RrRVpndnQd via @stanfordmedx

researchers going directly to metastatic breast cancer patients. https://t.co/iV2dnxfzIY?


Wednesday, 8 April 2015

SGO Recap & ASK the DOC - April 8, 2015 Chat

Twenty-nine participants joined us to discuss the latest research news from the SGO Annual Meeting held in March. Contributing to our discussion were Dr. Don S. Dizon and Dr. Ann Becker-Schutte, two of #gyncsm's healthcare moderators, as well as Dr. William Winter (NED the Band), Dr. Shannon Westin, Dr. Matthew Katz, Dr. Stephanie Blank and Lisa M Guzzardi, RN.

You may find the transcript here and analytics here. 

Some of the questions and responses during the chat are below:


T1: Pls comment on the study at SGO you found of most note. Was it OC FANG vaccine/ GOG 213 studies/ other?





T2: Which ovarian cancer research results are most exciting to you? Immunotherapy? Bevacizumab? Parp inhibitors?


T3: Pls discuss the implications of Dr Joura’s HPV study on cervical cancer & the Circulating Tumor Cells / Bevacizumab study. 

@gyncsm: studies re: BRCA 1) majority of BRCA carriers don’t have family hx 2) most ovarian cancer patients don’t know BRCA status.  
T4: How will these BRCA studies impact surveillance, ed, treatment?


T5: Now we open the chat for questions from our participants re: news they heard from the SGO mtg.

  • T5: any studies reveal benefit regarding endo ca recvng maint chemo Stage IIIc2 currently NED     A:Nothing yet - we need more maintenance studies for gynecologic cancers
  • T5: Question - any radiation oncology news from SGO?   A:there was very little major research on #radonc this year
  • T5: Does current genetic testing for #OC include mutations like TP53,RAD51D,etc ? Or just BRCA?Is this imp ?   A:#gyncsm panel testing test for many more mutations. should speak w genetic counselor. some is imp, some for future #sgo2015   
  • T5:Thoughts on how should patients/loved ones approach new study findings?   A:Open mindedness and always validate its credibility too


Our next chat will be at 9pm EST on May 13, 2015 . We will be joined by Kelly Mellott (@HelomicsCancer) as we discuss Personalized Medicine Advances for GYN Cancers. 


Patients & caregivers are invited to continue our discussion on the Smart Patients platform at https://www.smartpatients.com/partners/gyncsm.


Dee
Co-moderator #gyncsm chat


Resources shared during the chat: 

Highlights from the SGO Mtg
http://www.cancernetwork.com/conference-report/top-highlights-2015-sgo-annual-meeting

@SGO_org paper on end-points in Clinical trials
https://t.co/gNiU6SUICP

Incidental power morcellation of malignancy: a retrospective cohort study. - PubMed - NCBI 
http://t.co/pJOVG9XCfr

Association of Type and Location of BRCA1 and BRCA2 Mutations With Risk of Breast and Ovarian Cancer 
http://jama.jamanetwork.com/article.aspx?articleid=2214084#.VSXXv-chiQ8.twitter

Advanced Cervical Cancer and Circulating Tumor Cells treated with Bevacizumab
http://www.targetedonc.com/conference/sgo-2015/Patients-with-Advanced-Cervical-Cancer-and-Circulating-Tumor-Cells-Treated-With-Bevacizumab-Show-Improved-OS

Postmenopausal HRT & use of estradiol plus levonorgestrel IUD is assoc with increased risk of fallopian tube cancer
http://t.co/ppFIu9EDou

Additional Resources:

SGO Highlights:

AVASTIN GOG 213
OncLive “overall survival (OS) of nearly 5 months compared with chemotherapy alone for women with platinum-sensitive recurrent ovarian cancer, according to results from the phase III GOG0213: “




Surgeon vs CT results of size of tumors left behind.

Fosbretabulin /Avastin
OXiGENE Announces Presentation of Phase 2 Data Confirming That Addition of Fosbretabulin to Bevacizumab Significantly Increases Progression-Free Survival in Recurrent Ovarian Cancer

Immunotherapy

IP chemo advantages

Recommendations for the prevention of ovarian cancer : SGO

PARP inhibitor - olaparib (Lynparza)

diagnostic tool- bracaAnalysis

FANG vaccine trial / Immunotherapy



Endometrial Cancer -Cediranib
http://www.targetedonc.com/conference/sgo-2015/Cediranib-Monotherapy-Safe-Effective-in-Endometrial-Cancer

Supplements / Vitamins Are they helpful? May 8, 2019 Chat

We were pleased to have Stacy Kennedy MPH,RD (@stacykennedyrd) join us for this informative chat on vitamins and supplements.  You may find ...