February 28, 2014 - Rare Disease Day

Did you know that some gynecologic cancers are considered rare diseases? The NIH's Office of Rare Diseases Research considers Ovarian, Uterine, Endometrial, Fallopian tube, GTD (Gestational Trophoblastic Disease), Vaginal and Vulvar cancers as rare diseases.

Because of those designations as rare diseases #gyncsm has joined with over 190 organizations through out the world to become a Friend of Rare Disease Day. Rare Disease Day is February 28, 2014. This year's theme is Care: Join Together for Better Care . The rare disease website says "Considering rare diseases from an international perspective is also essential to send a strong message of hope to the millions of rare disease patients and families throughout the world who can break their isolation through a vast, united international network of solidarity. This year Rare Disease Day encourages us to continue finding ways to work together to provide the different kinds of care that people living with a rare disease need."

To see the face of Rare Disease Day please watch this video.



We will be using @gyncsm and #gyncsm to help spread the word about Rare Disease Day.

For more information just click on the logo to the right to be taken to the Rare Disease Day web page.


Dee
Co-moderator

Clinical Trials Revisted - February Chat

We had such a informative chat about clinical trials in November that we decided to continue the discussion this month. Last night during the hour chat 44 participants logged over 400 tweets using the #gyncsm hashtag. We expanded our previous discussion of barriers to clinical trial participation and brainstormed ideas to increase patient participipation such as  " @rzeiger: T1: frame #clinicaltrials as treatment options, not just as "experiments"" and" @JFreemanDaily: T1: I'd like to see a new medical specialty, perhaps among nurses: "clinical trial navigator" at each hospital". We also discussed how trials are funded, designing clinical trials for rare diseases ( where the number diagnosed with the disease is low),  and the impact personalized medicine and genetics will have on trial design.

The complete transcript can be found here.

Next Chat: March 12, 2014 9pm EST
Topic: Caregivers/ Family Impact

Resources:

Daily aspirin use 'reduces ovarian cancer risk by 20%' 

http://www.medicalnewstoday.com/articles/272387.php

Doctors say too few cancer patients enroll in studies 

http://medicalxpress.com/news/2014-01-doctors-cancer-patients-enroll.html

Clinical trials: My next good chance 

http://scopeblog.stanford.edu/2012/04/17/clinical-trials-my-next-good-chance/

Three Ways to Improve Clinical Trials through Crowdsourcing 

http://connection.asco.org/Commentary/Article/ID/3762/Three-Ways-to-Improve-Clinical-Trials-through-Crowdsourcing.aspx

Why I’m in a Clinical Trial 

http://grayconnections.wordpress.com/2013/11/03/why-im-in-a-clinical-trial/

Affordable Care Act requires insurers to cover clinical trials 

http://www.oncologypractice.com/oncologyreport/news/top-news/single-view/affordable-care-act-requires-insurers-to-cover-clinical-trials/4f568787781a84c3af7c928afec97556.html

Meeting the Challenges to Hereditary Cancer Research 

http://facingourrisk.wordpress.com/2013/10/02/meeting-the-challenges-to-hereditary-cancer-research/

Clinical Trials 101 

http://www.bcsmcommunity.org/clinical-trials-101/

ASCO Answers: Clinical Trials Coverage Through the Affordable Care Act 

http://www.cancer.net/sites/cancer.net/files/clinical_trials_coverage_aca_fact_sheet.pdf?et_cid=33278464&et_rid=463568882&linkid=Clinical%20Trials%20Coverage%20Through%20the%20Affordable%20Care%20Act

Smart Patients Trial Finder 

https://www.smartpatients.com/trials

ClinicalTrials.gov Trial Finder 

http://clinicaltrials.gov/

ASCO Podcast "What are Clinical Trials?" 

http://www.cancer.net/blog/2014-02/what-are-clinical-trials

Making Clinical Trials More Efficient, Informative, and Effective 

http://www.mskcc.org/blog/making-clinical-trials-more-efficient-informative-and-effective

See you next month,

Dee
Co-moderator

Cervical Cancer Chat - January 8, 2014

Happy New Year !

January is Cervical Cancer Awareness Month so we decided that this month's chat topic would be cervical cancer. Some of the topics we discussed were symptoms and diagnosis, the stigma of the disease, fertility issues, HPV and the HPV vaccine. We were pleased to have Tamika Felder, survivor and founder of Tamika and Friends and Katie Brown survivor and Director of Support and Advocacy for Lungevity share their experience with us.

We had 33 participants, 379 tweets and over 980,000 impressions. A transcript from the chat can be found here.

Next chat: Clinical Trials Continued - Wednesday,  February 12, 2014 at  9pm EST


Resources:

Cervivor - a community, a learning tool, an advocacy resource, and an online retreat for healing, connecting and thriving.

http://cervivor.org/

CDC - Symptoms of Cervical Cancer

http://www.cdc.gov/cancer/cervical/basic_info/symptoms.htm

HPV Myths & Misconceptions with Fact Sheet

http://www.ashasexualhealth.org/std-sti/hpv/myths-and-misconceptions.html

CDC - HPV Vaccines

http://www.cdc.gov/hpv/vaccine.html

Postlicensure safety surveillance for quadrivalent human papillomavirus recombinant vaccine.

http://www.ncbi.nlm.nih.gov/m/pubmed/19690307/?i=4&from=cdc%20hpv%20vaccine%20adverse%20events

Sorrow and teaching in an oncologist's office - OpEd

http://articles.mcall.com/2006-07-20/opinion/3689304_1_cervical-cancer-pap-smears-new-cancer-vaccine

Skills for Thriving in Modern Times - Video

http://t.co/nNmxfIv2lS

National Cervical Cancer Coalition

http://www.nccc-online.org/

http://www.inspire.com/groups/national-cervical-cancer-coalition/

ASCO Cervical Cancer Fact Sheet

http://www.cancer.net/sites/cancer.net/files/asco_answers_cervical.pdf

100 Questions & Answers About Cervical Cancer - Book

http://www.amazon.com/gp/aw/d/0763754471

100 Questions & Answers About HPV - Book

http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=Amazon.com+100+Questions+%26+Answers+About+HPV&rh=i%3Aaps%2Ck%3AAmazon.com+100+Questions+%26+Answers+About+HPV

FWC: What Every Woman Should Know About Cervical Cancer - Video

http://youtu.be/mtojVs9b150

CDC Prevent Cervical Cancer Infographic

http://www.cdc.gov/cancer/cervical/basic_info/infographic.htm

Reimagine: The Other Half of Care - Video

http://youtu.be/1mkT8lnUcMo

Thriver Soup Thursdays: A Feast for Living Consciously - Blog

http://www.heidibright.com/blog

Gary Thompson Story/CLOUD, Inc. Inspiration - Article

http://penangmonthly.com/the-internets-cloud-y-future/

See you next month, 

Dee

Open Mic Chat : December 11, 2013

Thank you to our moderators, survivors, caregivers, health care providers and "lurkers" who participated in our Open Mic chat. We covered a number of interesting topics including support groups, fertility discussions, when to see your PCP vs your oncologist, survivorship, etc. Here is a link to the transcript from tonight's  #gyncsm chat.

Next month's chat topic ( 1/8/14 at 9pm EST) is cervical cancer.

Resources shared during the chat:

Pancreatic Cancer Action Network –Vision of progress

http://www.pancan.org/section_about/vision_of_progress/

Woman to Woman

http://nyp.org/services/oncology/woman-to-woman-support-group.html

Stupid Cancer

http://stupidcancer.org/

Bright Pink

http://www.brightpink.org/

Sharsheret

http://sharsheret.org/

Cancer Schmancer

http://www.cancerschmancer.org/

Ovarian Cancer Discovery Deepens Knowledge of Survival Outcomes

http://www.sciencedaily.com/releases/2013/12/131209105230.htm?utm_content=bufferdfc96&utm_source=buffer&utm_medium=twitter&utm_campaign=Buffer#.UqZg3FkFCAQ.twitter

Ovarian Cancer Survivor Jill Pall Continues Fundraising Efforts to Help Kicking For The Dream Fight Ovarian Cancer

http://www.prweb.com/releases/2013/11/prweb11356230.htm

Tweet handles shared  

@ImermanAngels

@teaminspire

@CancerHopeNet

We at #gyncsm wish you all a Happy and Health Holiday. 

Dee

Co-moderator

Clinical Trial Chat Nov 13, 2013

Thank you to all the physicians, organizations, advocates and survivors who joined us last night for our chat about clinical trials. Here is a link to the chat.

Resource Links from our 11/13 chat: 

Previvors and Survivors
http://previvorsandsurvivors.com/

NCI's Learn About Clinical Studies page
http://clinicaltrials.gov/ct2/info/understand

NIH's Explore Clinical Trials page

http://www.nhlbi.nih.gov/health/health-topics/topics/clinicaltrials/

ACS Cancer Prevention Study-3 (CPS-3) http://www.cancer.org/research/researchtopreventcancer/participate-cancer-prevention-3

Lifestyle Intervention for oVarian cancer Enhanced Survival - LIvES study ‐ GOG 0225 http://www.ovarianlives.org/

NIH's ClinicalTrials.gov (search for open trials) http://clinicaltrials.gov/

Emerging Med Clinical Trial Matching Service - ovarian cancer form at http://www.emergingmed.com/networks/ocna/ or http://www.emergingmed.com/networks/ocrf/

Review of Clinical Trial Recruitment Apps

http://pixelsandpills.com/2011/01/20/etools-pharma-study-patient-recruitment-digital/

Phases of Clinical Trial Overview [ INFOGRAPHIC ]

http://visual.ly/phases-clinical-trials

OCTANE Ovarian Cancer Trial Awareness Network & Empowerment http://www.ovariancancertrials.org/

Mercy Flight http://www.mercyflightcentral.org/

The Truly Staggering Cost Of Inventing New Drugs [ Forbes Article ] http://www.forbes.com/sites/matthewherper/2012/02/10/the-truly-staggering-cost-of-inventing-new-drugs/

Is a Clinical Trial Right for Me? [ Article & INFOGRAPHIC ] http://www.partnersinresearch.org/clinical-trial-me/

Breast Cancer Trials https://www.breastcancertrials.org/bct_nation/home.seam

Trial Matching & Information Service http://www.curelauncher.com

Dee

Co-moderator

November Topic- Clinical Trials

Our next #gyncsm chat will be held on Wednesday November 13, 2013 at 9pm EST. The topic of the night will be clinical trials.

Do you have questions about clinical trials?
How to find a clinical trial that is right for you?
Do you wonder why it takes so long for a drug to go from clinical trial to patient use?
Have you taken part in a clinical trial and want to share your experience with others.

If you answered yes to any of these questions then be sure to join us on the 13th.

Dee
co-moderator

Oct 9,2013 Genetics and Personalized Medicine

Thank you to our moderators and the survivors, caregivers , health care providers and the "lurkers"  who participated in our October chat. Here is a link to the transcript from tonight's  #gyncsm chat.

• Angelina Jolie, the Thoughtful Patient http://www.huffingtonpost.com/rick-boulay-md/angelina-jolie-prophylactic-mastectomy_b_3322380.html?utm_hp_ref=tw
• Society of Gynecologic Oncologists Education Committee Statement on Risk Assessment for Inherited Gynecologic Cancer Predispositions http://d1izdzz43r5o67.cloudfront.net/guidelines/SocietyGynecologicOncologists.pdf
• Ovarian Cancer Action call for policy change on genetic testing availability www.ovarian.org.uk/news/news-and-press-releases/2013/ovarian-cancer-action-call-for-policy-change-on-genetic-testing-availability/
• foundationforwomenscancer.org
• Breast Cancer’s Link to Ovarian Cancer: It’s in Your Genes http://www.foundationforwomenscancer.org/wp-content/uploads/Breast-Cancers-Link-to-Ovarian-Cancer-Its-in-your-genes1.pdf
• Ovarian Cancer Risk Factors and Prevention http://www.cancer.net/cancer-types/ovarian-cancer/risk-factors-and-prevention
• Ovarian Cancer: Are You at Risk (with assessment quiz) http://www.ovarian.org/are_you_at_risk.php
• Genetic Information Nondiscrimination Act of 2008 http://www.genome.gov/10002328
• National Society of Genetic Counselors - Find a Genetic Counselor http://www.nsgc.org/FindaGeneticCounselor/tabid/64/Default.aspx
• My Family Health Portrait - A Tool from the Surgeon General https://familyhistory.hhs.gov/fhh-web/home.action
• Sharsheret Family Tree & Genetic Counseling Resources http://www.sharsheret.org/content/how-we-help/family-tree
• Meet Guyanna! Beating the Odds Against Ovarian Cancer (blog post) http://insideupmc.blogspot.com/2013/09/meet-guyanna-beating-odds-against.html
• The Basics of Personalized Medicine http://health.usnews.com/health-conditions/cancer/personalized-medicine
• Mayo Clinic Center for Individualized Medicine http://mayoresearch.mayo.edu/center-for-individualized-medicine/genomics-in-patient-care.asp
• The Personalization of Medicine http://health.usnews.com/health-news/hospital-of-tomorrow/articles/2013/07/12/the-personalization-of-medicine
• Living With Cancer: A Rainbow Coalition http://well.blogs.nytimes.com/2013/09/12/living-with-cancer-a-rainbow-coalition/?smid=tw-share&_r=0
• Personalized Medicine Coalition - Personalized Medicine 101 http://www.personalizedmedicinecoalition.org/about/about-personalized-medicine/personalized-medicine-101
• Ovarian cancer survivor offers insight for women http://www.baynews9.com/content/news/baynews9/news/article.html/content/news/articles/cfn/2013/9/28/ovarian_cancer_survi.html?cid=rss#.Ukcyuc3H5WY.twitter
• Clearity Foundation https://www.clearityfoundation.org/
• Caris Life Science http://www.carislifesciences.com/
• Colleen's Dream Ovarian Cancer Fact Sheet http://t.co/LneWaoWXus
• Personalized Medicine May Be Good For Patients But Bad For Drug Companies' Bottom Line http://www.forbes.com/sites/henrymiller/2013/09/25/personalized-medicine-may-be-good-for-patients-but-bad-for-drug-companies-bottom-line/
• Pop quiz: do you know what personalized medicine means? http://gigaom.com/2013/08/23/pop-quiz-do-you-know-what-personalized-medicine-means/

DAS