CF Blog - CYSTIC FIBROSIS PARENT EDUCATION

NACFC 2022 Research Highlights

12/19/2022

TOPIC:
NACFC 2022 Research Highlights: Update for CF Parents

WORKSHOP DATE:
Thursday, December 8, 2022

GUEST PRESENTER:
Charles Esther, MD, PhD

Hear the latest research and updates on CF from the 2022 North American Cystic Fibrosis Conference (NACFC).

PRESENTATION RECORDING:

Gastroenterology (GI) Issues in CF

4/28/2022

TOPIC:
Gastroenterology (GI) Issues & Complications in CF
It's not all about the lung!

WORKSHOP DATE:
Thursday, April 28, 2022
Virtual Event

GUEST PRESENTER:
Dr. Dhiren Patel
Pediatric Gastroenterology Specialist
SSM Health Cardinal Glennon Children's Hospital, St. Louis, Missouri

Recording of Workshop Available Below:

CLICK HERE to download the research paper demonstrating safety of Miralax.

2021 NACFC News & Highlights

12/16/2021

TOPIC:
News & Highlights from the 2021 North American CF Conference (NACFC)

DATE:
Thursday, December 9, 2021

GUEST SPEAKERS:
Jennifer Goralski, MD
UNC Pediatric and Adult CF Clinics

Listen to CF News and Research Highlights from the 2021 NACFC.

Recording of Workshop Available Below:
*Scroll below video to download slides from presentation!

The Impact of Clinical Research

6/25/2021

Enjoy the video presentation, and scroll below for links to recommended apps and websites to help you manage your medications!

TOPIC:
Breathing Easy with Cystic Fibrosis: The Impact of Clinical Research
Tune in for an overview of clinical trials. Learn how they work & discover why we need participants with CF more than ever.

DATE:
Thursday, June 24, 2021

GUEST SPEAKER:
Lisa Holmes, CRC RMAII
Research Coordinator, Duke

Video Recording of Workshop:

Infection Prevention 101

3/4/2021

TOPIC:
Infection Prevention 101:
Discover healthy best practices for those with CF and their extended families!

DATE:
Thursday, February 25, 2021

GUEST SPEAKERS:
Natalie Schnell, RN
UNC Hospital Epidemiology

Enjoy the video presentation, and scroll below for answers to questions and additional resources on infection prevention.

Video Recording of Workshop Available:

Q&A with Natalie

What is the Efficacy of Norwex supplies & cleaning cloths with silver anti-microbial woven in?

I was unable to find any scientific research in a peer-reviewed journal regarding this brand through UNC’s health sciences library and PubMed. Individual ingredients of the products in question could be researched to determine whether there is proven effectiveness against bacteria, viruses, fungi, etc. It is also important to note whether a product’s claims state that it can be used for disinfection.
If a microfiber cleaning cloth has silver woven into the fabric, it works to inhibit microbial growth within the cloth only. While microfiber is very effective, a cleaning solution should still be used with that item.

How effective are neck gaiters?

Based on most recent research, neck gaiters are an effective means of protection, as long as they fit well and consistently stay in place. The effectiveness can vary based on the type of material. Very effective combination when worn over a procedure mask.

Are there suggestions for low odor cleaning supplies?

One of the products used in the hospital is accelerated hydrogen peroxide (AHP), but 3% hydrogen peroxide is an effective disinfectant for home use. This is the same concentration found at pharmacies, but I am not sure if the brand-name cleaners like Lysol or Clorox use the 3% hydrogen peroxide or AHP in their hydrogen peroxide-specific preparations.
The EPA maintains lists of registered antimicrobial products with claims against common pathogens: https://www.epa.gov/pesticide-registration/selected-epa-registered-disinfectants

How effective is UV light for disinfection?

For UV light to be effective, it must reach all surfaces of the area to be cleaned in question – it will not penetrate the surface. For example, waving a device like a UV light wand over a cell phone will only disinfect that side of the cell phone – it would need to be waved over the other side, as well. Junctions between the case and the phone can have an increased microbial burden, and physical cleaning will be the best way to ensure thorough removal. Using items like UV light may also effect the warranty of your device – follow the manufacturer’s instructions for cleaning.
Unlike the EPA-registered items we would use in the hospital with proven claims, there is not currently an agency that validates whether these products for home use meet the standards they advertise. While we know UV light works effectively for disinfection, there is no way to confirm whether the devices sold by a myriad of companies use adequate amounts of light, what the specified square footage for use may be, and what the quality of the bulbs sold with the device is.

Do you have suggestions for proper mask fit?

Department director Emily Sickbert-Bennett’s video for optimizing mask fit can be found here:
https://www.youtube.com/watch?feature=youtu.be&v=UANi8Cc71A0

Summary graphics of recent mask efficacy data are below:
(click on image to enlarge)

Mask Fit 1

Mask Fit 2

2020 NACFC Recap

12/14/2020

TOPIC:
2020 NACFC Recap with Dr. Retsch-Bogart

Dr. Retsch-Bogart, Pediatric Pulmonologist from UNC-CH shared recap and updates from the 2020 North American Cystic Fibrosis Conference (NACFC).

DATE:
Thursday, December 10, 2020

GUEST SPEAKERS:
Dr. Retsch-Bogart
Pediatric Pulmonologist
UNC-Chapel Hill

Video Recording of Workshop Available:

Research Updates from 2019 NACFC

11/19/2019

TOPIC:
Research Updates from 2019 North American Cystic Fibrosis Conference (NACFC)

DATE:
Thursday, November 19, 2019

GUEST SPEAKERS:
Dr. Marianne Muhlebach, MD

Recording from this workshop is available:

Research Updates from the 2018 North American Cystic Fibrosis Conference (NACFC)

11/8/2018

TOPIC:
Research Updates from the 2018 North American Cystic Fibrosis Conference (NACFC)

DATE:
Thursday, November 8, 2018

GUEST SPEAKER:
Elisabeth Dellon, MC, MPH
Professor of Pediatrics
UNC Pediatrics Pulmonology

Recording of the workshop is available below:

Research Highlights from the North American Cystic Fibrosis Conference

12/14/2016

Archived Event

Date:
Wednesday, December 14, 2016

Guest Speakers:
Margaret W. Leigh, MD,
Director, UNC Pediatric CF Center

George Retsch-Bogart, MD,
Associate Director,
UNC Pediatric CF Center

*No notes or recordings are available from this workshop