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