Thursday, January 29, 2015

January 2015 NPC-QIC Action Period Call Update

 
Thanks again to Trent Neely (dad to Avery, HLHS), for January's call summary.  If you're not a member of NPC-QIC's HLHS Parent Advisory Facebook Page, please check it out.  It's a great place for updates and a simple avenue to engage in the HLHS collaborative.  For those new to the HLHS community, the National Pediatric Cardiology Quality Improvement Collaborative holds monthly calls to discuss ongoing work and action items to continue tackling HLHS and improving the treatment and outcomes for our children.

January 2015 Call Update

After a winter holiday break, the Action Period calls resumed with a flurry of activity! The call began with an announcement of three new centers to the Collaborative, bringing the total to 58 centers. Welcome UF Health Shands Children’s Hospital, Golisano Children's Hospital, and University of Minnesota Masonic Children's Hospital.
 
A report of research followed, with a study conducted through the NPC-QIC database, examined the timing of Stage 2 palliation. There is wide variety in the timing of the second surgery between centers and this study looked to evaluate any risks or benefits to an early or late timing of Stage 2. Of the data analyzed, there was a variation in timing that ranged from 3 ½ to 7 months with the early group having Stage 2 prior to about 5 months. There were some interesting findings that I’m sure will help centers think about the optimal timing of surgery and what shorter or longer wait times for the Glenn might translate to long-term. This research is currently being prepared for publication so look for it in an upcoming Research Explained from the NPC-QIC. An abstract is available here: http://circ.ahajournals.org/conte…/…/Suppl_2/A12605.abstract
 

An update on a new project to develop a Book of Hope through Empowered by Kids was then provided. This book will include stories from parents, patients, nurses, a cardiologist, and a surgeon to help newly diagnosed parents through their journey. Deadlines for submissions are January 31, 2015, so get your submissions in ASAP!  If you need further information, please read our recent blog post on the HLHS Book of Hope.

There was then a brief discussion of funding opportunities that the Collaborative is pursuing to help further the current work as well as the planned Phase 2 project. Phase 2 is moving forward and building upon Phase 1 which was limited to just the Interstage period. Phase 2 will focus on diagnosis through the first year of life and will include additional data about neuro-development and family quality of life.  Phase 2 will also incorporate parent reported data collection as well.

There is a lot of new and exciting developments for the Collaborative; it's energizing to see the ongoing work for HLHS children and families, and in turn, improving the care and treatment for all critical congenital heart defects.
 

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Previous Blog Posts

Tuesday April 21st, 2017: Parent Scholarships NPC-QIC 2017

Monday, August 8, 2016: On Finding His Tribe

Thursday, November 19, 2015: You're the General Manager

Monday, July 20, 2015: Fontan Care Package Launch

Monday, June 8, 2015: SBH Supports Full Transparency in Outcomes Data

Wednesday, May 6, 2015: New Care Package Items

Wednesday, April 29, 2015: A Tea Just for You: Heart Mom Comfort Tea!

Monday, March 2, 2015: Parent Travel Scholarships - NPC-QIC 2015 Spring Learning Session!

Tuesday, February 17, 2015: NPC-QIC/SBH Response to HLHS Statistics Shared by the CDC

Monday, February 2, 2015: Fundraising with Heart: Tink & Key

Thursday, January 29, 2015: January 2015 NPC-QIC Action Period Call Update

Wednesday, January 28, 2015: Fundraising with Heart: The Baby Blue Sound Collective

Thursday, December 18, 2014: Sharing HOPE: An exciting opportunity

Tuesday, September 30, 2014: HLHS Collaborative: September's Action Period Call

Tuesday, August 26, 2014: Parent Travel Scholarships - NPC-QIC 2014 Fall Learning Session!

Monday, August 18, 2014: CHD Kids and School Special Services

Monday, August 11, 2014: Using Crisis to Create: The Asher James Foundation

Wednesday, July 2, 2014: HLHS Collaborative: June's Action Period Call

Monday, June 23, 2014: Pink for Paul!

Friday, June 13, 2014: Why There are No "Brothers by Heart"

Tuesday, May 13, 2014: What If...

Wednesday, April 2, 2014: HLHS Collaborative: March's Action Period Call

Wednesday, March 5, 2014: HLHS Collaborative: February's Action Period Call

Saturday, February 15, 2014: Shopping for a Cause

Thursday, February 6, 2014: HLHS Collaborative: January's Action Period Call

Friday, January 17, 2014: Research Opportunity: Prenatally Diagnosed Moms Need Apply!

Monday, January 6, 2014: HLHS Collaborative: December's Action Call

Friday, December 27, 2013: Dual Perspectives: Growing Up with HLHS

Wednesday, December 4, 2013: Take Action: Be Part of the Solution

Tuesday, December 3, 2013: Join Millions for #GivingTuesday

Monday, November 18, 2013: A Mother's Perspective: The Other Sibling

Wednesday, November 6, 2013: A Unique Opportunity with What to Expect

Tuesday, November 5, 2013: Time to Vote!

Friday, November 1, 2013: 2nd Annual Sisters by Heart Avon Fundraiser

Thursday, September 12, 2013: Possibilities: Cord Blood Banking

Tuesday, September 3, 2013: A Unique Partnership

Tuesday, August 6, 2013: Fontan Series: Kylan's Story

Monday, July 22, 2013: Fontan Series: Lily's Story

Monday, July 15, 2013: Fontan Series: Aly's Story

Monday, May 13, 2013: A Heartfelt Donation: Medical Masks in Anya's Memory

Monday, April 22, 2013: Parent's Perspective: What to Pack for the Hospital

Thursday, April 18, 2013: Getting a 2nd Opinion: An Inpatient Perspective

Monday, April 15, 2013: Getting a 2nd Opinion: An Outpatient Perspective

Saturday, February 9, 2013: It's February, Celebrate Black History Month!

Monday, February 4, 2013: A Heartfelt Donation: eBay Foundation

Friday, February 1, 2013: A Unique Collaboration: SBH and the NPC-QIC

Monday, January 28, 2013: NPC-QIC Winter Learning Session

Friday, December 21, 2012: A Mothers Perspective: Feeding issues

Wednesday, December 5, 2012: A Heartfelt Donation: Smart Mom Jewelry

Sunday, November 18, 2012: Heartfelt Donations: aden + anais and The Dorsett Family

Tuesday, November 13, 2012: Gifts from the Heart: Stella & Dot

Monday, November 5, 2012: Creative Donors: United Way Workplace Campaigns

Sunday, November 4, 2012: A Mother's Perspective: Healing a Hurting Marriage

Sunday, October 28, 2013: A Heartfelt Donation: Avon

Saturday, October 27, 2012: A Gift for Our Fighters

Monday, October 15, 2012: Stories of Hope: Tyler Sajdak

Monday, October 8, 2012: A Heartfelt Donation: The Mended Heart

Monday, September 24, 2012: Fun in the Sun: Year Two

Sunday, September 16, 2012: Creative Moms: Warrior Scrapbooking

September 11th, 2012: Remembering Our Heroes

June 6th, 2012: Top Ten Discharge List