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2015 PCD 'On the Move' Preliminary Meeting Agenda
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7:45 -- 8:00

Welcome from the PCDF & Opening Remarks

Benjamin Gaston, MD                                           Margaret Leigh, MD                                                Michele Manion, PCD Foundation

Thursday Morning Session: PCD Basic Science

Session Chair: Lawrence Ostrowski, PhD

8:00 - 8:20

Cilia Biogenesis, Structure & Function

TBD

8:20 - 8:40

Evolving Genetic Picture in PCD

Maimoona Zariwala, PhD, UNC, Chapel Hill

8:40 – 9:00

PCD Cell Culture Models

George Solomon, MD UAB, Birmingham

9:00 – 9:20

Mouse Models in PCD

Lawrence Ostrowski, PhD

9:20 – 10:00

Strategies and priorities for developing therapies to address the basic defect(s)

Panel Discussion Leader: Larry Ostrowski, PhD

10:00 - 10:15

Morning Break

 

Late Morning Session: PCD Genetics & Diagnosis

Session Chair: Margaret Leigh, MD

10:15 - 10:35

PCD Diagnosis: Clinical Phenotype

Sharon Dell, MD, University of Toronto

10:35 – 10:55

TEMs (evaluating ciliary ultrastructure)

Margaret Leigh, MD, UNC, Chapel Hill

10:55 - 11:15

Nasal Nitric Oxide Measurement in PCD

Milan Hazucha, PhD, UNC, Chapel Hill

11:15  - 11:35

High-speed Videomicroscopy and  Immunofluorescence: Additional Diagnostic Tools for PCD

Mark Chilvers, MD, CFRI, U of British Columbia

11:35 – 11:55

PCD Genetics Nuts and Bolts:  Ordering tests and interpreting reports

TBD

12:00 - 1:45 Lunch Roundtable Discussions

Nursing & Patient Education and Support  Virginia Gonzales, BSN, Rainbow Babies (confirmed)

Developing Research Models for PCD    George/
Cal Cotton,

Alternative Therapies that May Influence Care         Margaret Leigh, MD                                                    Michele Manion (confirmed)

ACT Options

1:45 - 3:15 Hands on Nasal NO Training/Hands on Ciliary Biopsy Separate rooms

Thursday Afternoon Session: PCD State of the Art

Session Chair: Sharon Dell, MD

3:15 pm - 3:35 pm

Lung function and Imaging in PCD

Stephanie Davis, MD Riley Children's Hospital

3:25 pm – 3:45 pm

PCD Microbiome

Scott Sagel, MD, Colorado Children’s Hospital

4:15 pm- 4:45 pm

Challenging Infections and Advanced Disease in the PCD Adult Lung

TBD

4:45 pm - 5:15 pm

Middle ear and sinus issues in PCD

Sam Daniel, MD, McGill University

5:15 pm - 6:15

Fellows Poster Presentation

Moderators--Thomas Saba, MD & LeighAnne Daniels, MD

 

 

5:45 - 7:00  pm Poster Session and Reception

Group Dinner 7:00 - 9:00

7:00 – 745 pm

The Patient Perspective: Engaging the PCD Patient Community

Lynn Ehrne, PCD Foundation & Patient Panel

7:45  - 8:15

A Transplant Story

Eric & Grace Gregory







Friday Morning Session: Heterotaxy, Cardiology and Associated Issues

Session Chair:  Adam Shapiro, MD

8:00 - 8:30

Keynote Address: PCD Past, Present and Future

Michael Knowles, MD, UNC, Chapel Hill

8:30 - 9:00

Heterotaxy and Cardiac Defects in PCD

Stephanie Ware, MD (invited)

9:00 - 9:30

Conditions Overlapping with PCD

Margaret Rosenfeld, MD


BREAK


Friday Late Morning Session: Creating a PCD Clinical Center: Challenges & Opportunities

Session Chair: Benjamin Gaston, MD,

9:45 – 10:15

PCDF Clinical Practice Guidelines: Putting them into practice

Adam Shapiro, MD

10:15 -  10:30

North American PCD Registry

Michele Manion

10:30 - Noon

Clinical Centers Challenges--Group Discussion

Benjamin Gaston, MD

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7:45 -- 8:00

Welcome from the PCDF & Opening Remarks

Benjamin Gaston, MD                                           Margaret Leigh, MD                                                Michele Manion, PCD Foundation

Thursday Morning Session: PCD Basic Science

Session Chair: Lawrence Ostrowski, PhD

8:00 - 8:30

Cilia Biogenesis, Structure & Function

Steven Brody, MD, Washington University 

8:30 - 9:00

Evolving Genetic Picture in PCD

Maimoona Zariwala, PhD, UNC, Chapel Hill

9:00 - 9:30

Models of PCD—Cell Culture Techniques

Cal Cotton, PhD,  

9:30 - 10:00

Designing High-Throughput Screening Assays

Lawrence Ostrowski, PhD

10:00 - 10:15

Morning Break

 

Late Morning Session: PCD Genetics & Diagnosis

Session Chair: Margaret Leigh, MD

10:15 - 10:45

PCD Diagnosis: Clinical Phenotype  and Nasal NO

Margaret Leigh, MD, UNC, Chapel Hill

10:45 - 11:15

PCD Genetics Nuts and Bolts:  Ordering tests and interpreting reports  

Tom Ferkol, MD   

11:15 - 11:45

TEMs (evaluating ciliary ultrastructure)

John Carson, PhD, UNC, Chapel Hill

11:45  - 12:15

Nasal Nitric Oxide

Benjamin Gaston, MD, Ohio University and/or Milan Huzucha                                           

12:15 - 12:45

High-speed Videomicroscopy and  Immunofluorescence: Additional Diagnostic Tools for PCD  

Mark Chilvers, MD, CFRI, U of British Columbia

12:45 - 2:15 Lunch Roundtable Discussions

Nursing & Patient Education and Support  Virginia Gonzales, BSN, Rainbow Babies (confirmed)

Developing Research Models for PCD     George Solomon, MD

Alternative Therapies that May Influence Care         Margaret Leigh, MD                                                    Michele Manion (confirmed)

Airway Clearance Options

 

2:15 - 3:15 Hands on Nasal NO Training

Thursday Afternoon Session: PCD State of the Art

Session Chair: Sharon Dell, MD

3:15 pm - 3:45 pm

Lung function and Imaging in PCD

Stephanie Davis, MD Riley Children's Hospital

3:45 pm - 4:15 pm

PCD Microbiome

Scott Sagel 

4:15 pm- 4:45 pm

Challenging Infections and Advanced Disease in the PCD Adult Lung

TBD

4:45 pm - 5:15 pm

Mucus Clearance in PCD

TBD

5:15 pm - 6:15

Fellows Poster Presentation

Moderators--Thomas Saba, MD & LeighAnne Daniels, MD

 

 

 

 

 

 

5:45 - 7:00  pm Poster Session and Reception

Group Dinner 7:00 - 9:00

7:00 - 7:45 pm

Keynote address: PCD Past, Present & Future

Michael Knowles, MD, UNC, Chapel Hill  

7:45 - 8:15

Making Lemonade: A Transplant Story

Jorge & Leslie Bacardi and Eric & Grace Gregory

8:15 - 9:00

Patient Panel

 







Friday Morning Session: ENT, Cardiology and Associated Issues

Session Chair:  Adam Shapiro, MD

8:00 - 8:30

ENT issues in PCD

Sam Daniel, MD, McGill University

8:30 - 9:00

Heterotaxy and Cardiac Defects in PCD

Stephanie Ware, MD, Indiana University

9:00 - 9:30

Conditions Overlapping with PCD





Friday Morning Session: Creating a PCD Clinical Center: Challenges & Opportunities

Session Chair: Benjamin Gaston, MD,


PCDF Clinical Centers Overview

Adam Shapiro, MD


North American PCD Registry

Michele Manion


Clinical Centers Challenges--Group Discussion

Benjamin Gaston, MD

 
Call for Scientific Abstracts and Case Reports 2015
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PCD On The Move: Advances in Primary Ciliary Dyskinesia Research, Diagnosis and Care
August 26-28, 2015
Minneapolis, Minnesota

CALL FOR SCIENTIFIC ABSTRACTS AND CASE REPORTS

ABSTRACT CONTENT

Scientific Abstracts:

Accepted abstracts will be presented in the form of a poster.
Your scientific abstract must contain:
1.  A descriptive title, list of authors and institutions;
2.  An introduction/rationale to the study;
3.  The methods used;
4.  The results of the study;
5.  Conclusions of the study.

Case Reports:

Accepted case reports will be presented in the form of a poster or a 10-minute oral presentation.
Case reports must contain:
1.  A descriptive title, list of authors and institutions;
2.  An introduction;
3.  A description of the case including a detailed description of how the diagnosis was made;
4.  A discussion of the novelty and importance of the scientific case.

Language: The abstract must be submitted and presented in English.

Prior publication: Abstracts are not to be submitted for consideration if the work covered is to be published or presented at a major national or international meeting prior to the 2015 PCD On The Move Conference.

Funding source: All abstracts must specify the funding source.

Co-authors: It is required that all authors listed on the abstract have knowledge of the abstract submission.

Disclosure: It is required that the primary author disclose any potential conflicts of interest.

Abstract length: The total word count may not exceed 500 words (title, authors’ information, institutions, tables, images, and spaces between words do not count towards the 500 word count).

Abbreviations: Abbreviations should be spelled out on the first occurrence in the text.

Tables/Images: You may include 1 table or figure.

SCHOLARSHIPS

Four case reports will be selected for oral presentation during a Fellows Case Report session on Thursday, August 27.  If your case report abstract is chosen for an oral presentation, the presenter will receive a scholarship to cover travel, lodging, food and registration costs.

AWARDS

Two poster presentations will be recognized for exceptional merit at the conclusion of the poster session and will receive a $250 cash award.  Awards will be based on both scientific content and poster presentation. 

ABSTRACT PRESENTATION

  • Accepted scientific abstracts will be presented as a poster presentation
  • Accepted case reports will be assigned as either an oral or a poster presentation
  • The person assigned as the presenting author will be expected to present at the conference
  • Authors assigned to a poster presentation will be expected to display illustrative material in the form of a poster
  • Authors assigned to an oral presentation will be expected to prepare and 10-minute presentation with Power Point visual aids.  This will be followed by a 5-minute question and answer period.
  • Oral and poster presentations will take place in the afternoon on Thursday, August 27, 2015. 

POSTER GUIDELINES:

Posters will be displayed throughout the conference.  Poster set-up and take-down instructions will be provided on-site.  Posters must be formatted to one of the two following dimensions:

• 48”w x 36”h (122cm w x 91cm h)
• 60”w x 36”h (152cm w x 91 cm h)

Please note: The PCD Foundation will not be responsible for posters left at the end of the meeting on Friday, August 28.

SUBMISSION:

Abstracts are to be submitted in Microsoft Word Format to the PCD Foundation c/o Lynn Ehrne at This e-mail address is being protected from spambots. You need JavaScript enabled to view it


Notification of abstract acceptance or rejection will be sent electronically to the presenting author in early August.


The body of the email must contain the following information:

  • Name of presenting author
  • Address, email address and phone number of presenting author
  • considered


  • Title of abstract

DEADLINE:

Friday, July 31, 2015
5:00 PM, Eastern Time

Late submissions will not be considered

 

 

 

 

 
PCDF CARE Day Rainbow Babies June 2015
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Please join us for  a CARE (Clinical Centers Awareness and Regional Education) Day sponsored by Rainbow Babies Hospital and the PCD Foundation.

 

Meet Dr. Benjamin Gaston and his colleagues from the Rainbow Babies PCD Clinical Center and learn more about goals of the PCD Clinical Centers Network and services offered for families affected by PCD at the Rainbow Babies center. A light dinner will be served.

 

For more information and registration click here!

 

 
PCD On The Move! Scientific Conference August 2015 Registration
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Event Details

Primary ciliary dyskinesia (PCD) is on the Move!

Please join us in beautiful Minneapolis, Minnesota for the second annual 'PCD on the Move' conference, an information-packed two day conference that will bring together leading North American and international PCD experts to discuss exciting advances in PCD, expanding a network of clinical and diagnostic centers and next steps to accelerate PCD research.

Click here to register!

 

Objectives:

(1) Enable attendees to optimize clinical care of patients with PCD by providing education, access to experts and hands-on learning opportunities for recent advances in PCD to include:

A.    Improved diagnostic capabilities (nasal nitric oxide, reading biopsies, genetic
testing)
B.     Evolving gene identification
C.     Novel phenotypic features/overlapping syndromes
D.     Basic science initiatives that inform our understanding of motile cilia disorders

(2) Encourage expansion of existing clinical care and research networks with the goal of accelerating clinical research trials

(3) Identify clinical research opportunities and prioritize research goals

Who Should Attend:

  • Existing PCD clinical centers personnel
  • Representatives from academic centers interested in becoming part of the PCD network
  • Local/regional clinicians/researchers
  • Allied health professionals and scientists with an interest in PCD
Conference Agenda:

This year we've added sessions on ENT and cardiology issues related to motile cilia disorders, as well as a basic science component.

http://www.pcdfoundation.org/en/news/136-2015-pcd-on-the-move-meeting-agenda-

Travel/Registration Stipends:

The PCD Foundation will have a limited number of travel/registration stipends available for attendees. Preference is support for young investigators. Please contact Michele Manion at This e-mail address is being protected from spambots. You need JavaScript enabled to view it for more information.

 

Abstracts and Posters:

www.pcdfoundation.org/en/news/135-call-for-scientific-abstracts-and-case-reports-2015

Please submit to This e-mail address is being protected from spambots. You need JavaScript enabled to view it

 

SPONSORSHIP OPPORTUNITIES ARE AVAILABLE! PLEASE CONTACT LYNN EHRNE AT This e-mail address is being protected from spambots. You need JavaScript enabled to view it FOR MORE INFORMATION.

 
San Francisco Rare Disease Day Event 2015
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Attention California and Nevada PCDr's: Here is information about the upcoming Stanford PCD educational event,to be held on February 28th and being hosted by the PCD Foundation and Stanford PCD Clinic. A flyer for more info, an Infection Control Policy, directions and map are attached. Please take a look at all these items.

Heidi Bjornson-Pennell is the event organizer and we really hope you can come if you are anywhere close at all! It is going to be a great day with a lot of experts talking about PCD, a social worker addressing many patient concerns, and an amazing opportunity for some of us to meet one another. Please let Heidi know if you have any questions, and also please rsvp to Jackie Zirbes (number and email is on the flyer) if you can make it! Thank you so much! We hope to see you there!

 

San Francisco RDD Agenda 2015

 

Infection Control Guidelines

 
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