Remembering

A worldwide candlelighting for families that have lost children will be held Sunday at 7pm in every time zone.  For more information,click here.
  

Citizen Scientists

"that's my data"?  an update of this topic appeared in today's Wall Street Journal.The trend? To give patients access to their own research data.
 

Adolescent and Young Adult Oncology Creates Some Buzz on the International Stage

re-posted from the ayavoice

  

Set against Auckland, New Zealand’s backdrop of black sand beaches and ocean for as far as the eyes can see, the 43rd Congress of the International Society of Pediatric Oncology (SIOP) provided experts from 93 countries an opportunity to come together. We’re proud to announce that two of our Adolescent and Young Adult (AYA) Oncology team members, Sue Lindemulder, MD and Amy Frohnmayer, were in attendance.

“The attention devoted to the AYA-specific concerns at this conference was an indication of the growing interest this field is cultivating. There is a lot of work to do, and it’s energizing to know that the mission of our program is shared by a larger network of providers, researchers, and advocates worldwide.” - Amy Frohnmayer, Research Assistant, AYA Oncology Program

There were multiple and varied sessions dedicated to AYA including five symposia, and the final keynote address. Ms. Frohnmayer presented on the fertility preservation decision-making process of adolescent and young adult women with cancer. Other topics ranged from long-term survivorship and care to the transition from pediatric to adult care, and AYA-specific disease physiology.
It wasn’t all serious business though. The exuberant atmosphere that AYA survivors bring to everything they do undoubtedly livened up the conference as many from Canteen New Zealand were in attendance as volunteers. The fun also included movie night and a screening of Wrong Way to Hope.
They AYA Program also had three posters presented at the conference.
AYA Fellowship
AYA Case Study
AYA Treatment & Survivorship Cohort

Adolescents and young adults with cancer have different needs from other patients. The Knight Cancer Institute is proud to offer Oregon’s only program designed exclusively for people ages 15-39. Our internationally-recognized, award-winning Adolescent and Young Adult (AYA) Oncology Program is dedicated to ensuring all AYAs with cancer have access to services tailored to their specific needs.

Pediatric Grand Rounds: COG Chair, Dr. Peter Adamson

Dr. Adamson will be giving the Robert C. Neerhout MD lecture on Thursday Nov 3 at 8am in the Doernbecher Children's Hospital Vey Auditorium (11th floor).  His lecture will be entitled, "Childhood Cancer Research: 21st Century Science, 20th Century Clinical Trials."
  
for a stream of the archived lecture, click here.  

Patient access to their own research data?

" Key objectives: Enable patients to obtain their own data back from samples they donate to trials "
  
For more about the Portable Legal Consent Project at Sage Bionetworks, click here.  


update 3/22/2012:  "DNA donor rights affirmed"... see what an NIH working group now says about patients' right to know on incidental findings.  

Dr. Abraham presents at DIPG Conference (NIH)

Last week PCB senior scientist, Dr. Jinu Abraham, presented his invited talk entitled, "Rapid Preclinical development of targeted therapy combination for DIPG" at the DIPG Consensus Conference, which was held October 6-7^th at NIH's Bethesda campus.  A subject of the conference was determining the role of biopsy in the standard of care for this form of brainstem high grade glioma.  Noted to be equally important, however, is the search for a combination of targeted agents that makes this tumor a uniformly survivable condition.  
  

Hemophilia Program Fundraiser

This fundraising event is in cooperation with the Hemophilia Foundation of Oregon and all proceeds are shared.  Funds generated from this event are typically used for program research efforts. 

Please join us on October 16^th.  Admission is $150 per person.  Please also share this invitation with anyone you think might be interested in attending and supporting the Hemophilia Center and the Hemophilia Foundation of Oregon.  RSVP to 503-209-7539 or marita@hemophiliaoregon.org.

Pediatric Cancer Teleconferencing to Anchorage & Medford

Through the The Caroline Pryce Walker Conquer Childhood Cancer Act of 2008 (3R01CA133229-4S1), the National Cancer Institute has funded purchase and installation of Video Teleconferencing equipment at two community-based pediatric practices that refer the greatest number of pediatric sarcoma and other childhood cancer patients to OHSU.  These practices are Providence Alaska Medical Center (Anchorage, AK) and Medford MD (Medford, OR).  The new equipment allows two way video conferencing but has also camera capability to use for face to face patient consultation as well. The Alaska site routinely participates in tumor board and a bi-weekly teleconference to review shared patients, and the Medford site uses this resource for general education as well as participating in tumor board and care conferences.  Since the implementation of videoconferencing this year, twelve new pediatric cancer patients from Alaska have been referred for coordinated care or consultation by the OHSU multi-disciplinary physician team.

 

Update: Legacy Gift workshop at COG

This afternoon's workshop on the value of autopsy in finding new treatments was very well received, if not at times slightly tearful in a happy way.  Oncology social worker Caroline Macuiba and PCB researcher Jen Alabran presented results of a 60 family survey of how, if ever, it would be appropriate to discuss the topic of autopsy for donating a tissue from which childhood cancers could be better understood & treated.  Interview participants were from families of children affected with sarcomas, brain tumors, or other pediatric cancers.  Two mothers, Sandy and Kim, who themselves are cancer survivors presented their families experiences with tissue donation after their sons passed away from brainstem gliomas.  Remarkable people, but what they relate is the closure and altruistic value of such gifts.  
  
This study and workshop was funded by NCI in response to the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008 (3R01CA133229-4S1) in partnership with the Northwest Sarcoma Foundation.  This project's inspiration was the efforts of Nancy Goodman and KidsvCancer.org .  
  
For more information, visit ccurefast.org or email Jen,  alabran (at) ohsu.edu.  

COG Workshop: Overcoming Autopsy Barriers in Pediatric Cancer Research

Providing Hope For Tomorrow's Cures

  

5 pm WEDNESDAY, SEPTEMBER 14TH, 2011

Roswell Room, Atlanta Conference Level, Hyatt Regency Hotel

(runs concurrently with the Children's Oncology Group Meeting)

  

Tumor samples obtained by an autopsy offer a potentially important scientific impact and creates a positive outlet to a grieving family. This workshop addresses the current barriers to obtaining an autopsy consent and provides guidelines on how to overcome these barriers at your institution.

  

Refreshments will be provided.

  

rsvp to Jen Alabran,  alabran (at) ohsu.edu


A joint venture of OHSU PCB and the Northwest Sarcoma Foundation.  For details, click here.