| PCDF Clinical Centers Network
The PCD Foundation Clinical and Research Centers Network
Ultimately, it is the goal of the PCD Foundation to find a cure for PCD. This will require significant investment in research and, because we are a small patient group, the participation of as many affected individuals as possible. To facilitate participation, we and our international partners are dedicated to creating networks of PCD centers ito serve as focal points for diagnosis, research, treatment and data collection (patient registry). To this end, we are proud to announce the creation of The PCD Clinical Centers Network!
This network builds on th existing Genetic Disorders of Mucociliary Clearance [Research] Consortium (GDMCC). GDMCC sites will continue their role as research centers, as well as serving as referral sites for diagnostic and clinical visits under the new PCD Foundation Clinical Centers Network. With over a decade of experience working as an expert network, GDMCC sites will also provide invaluable mentoring services for newer sites joining the network.
Genetic Disorders of Mucociliary Clearance Research Sites (note: most, but not all of these research sites also see patients for non-research clinical visits):
- Children's Hospital of Colorado, Denver, Colorado
- Children's Hospital and Regional Medical Center, Seattle, Washington
- National Institute of Allergy and Infectious Diseases, Bethesda, Maryland
- National Jewish Health, Denver, Colorado
- The Hospital for Sick Children, Toronto, Ontario, Canada
- McGill University Children's Hospital, Montreal, Quebec, Canada
- Riley Hospital for Children, Indianapolis, Indiana
- Stanford University, Palo Alto, California
- University of North Carolina, Chapel Hill, North Carolina
- Washington University, St. Louis, Missouri
PCD Clinical Network Full Sites
PCD Clinical Network full sites are sites that have met the mandatory requirements to be recognized as a PCD Clinical Center site, including:
-Submitted an application for review and approval by our Clinical Centers Committee
-Identifying a multi-disciplinary team to care for PCD patients
-Ensured access to complete diagnostic services to include ciliary biopsy and nasal nitric oxide measurements
-Agreed to required training, ongoing education and site auditing visits
- Boston Children's Hospital, Boston Massachusetts
Umakanth Khatwa, MD/Kenan Haver, MD
- Children's Respiratory and Critical Care Specialists, Minneapolis, MN
William Wheeler, MD
Anne Griffiths, MD
- Northwestern University/Lurie Children's Hospital
Mary Nevin. MD (Peds)
Michelle Prickett, MD (Adult)Rainbow Babies and Children's Hospital/University Hospitals, Cleveland, Ohio
- Benjamin Gaston, MD (Peds)
Steven Strausbaugh, MD (Adult)
- University of Alabama, Birmingham Alabama
Wynton Hoover, MD (Peds)
George (Marty) Solomon, MD (Adult)
- University of Kansas/Children's Mercy Kansas City, Kansas
Hugo Escobar, MD (Peds)
Deepika Polineni, MD (Adult)
- University of Michigan/C.S. Mott Children's Hospital
Thomas Saba, MD (Peds)
Thomas Sisson, MD (Adult)
- University of Pennsylvania/Children's Hospital of Philadelphia
Maureen Josephson, DO / Samuel Goldfarb, MD (Peds)
Daniel Dorgan, MD (Adult)
PCDF Clinical Centers Affiliate Sites
Affiliate sites have submitted an application to be full sites, but may not have all the required resources in place right now, for instance, may not have resources to invest in expensive diagnostic equipment or may not have all required staffing covered at this time. Affiliate sites work cooperatively with full sites and are first in line to be added as full, accredited sites
- Children's Hospital of Eastern Ontario, Canada
Thomas Kovesi, MD
- Dalhousie University/Respiratory Associates Nova Scotia, Canada
Dimas Mateos-Corral, MD
- University of South Carolina, Columbia, South Carolina
Trey Brown, MD (Peds)
- University of Miami, Florida
Andrew Colin, MD (Peds)
Tarig Ali-Dinar, MD (Peds)
Mattias Salathe, MD (Adult)
- University of South Florida, Tampa
Bruce Schnapf, DO (Peds)
Marisa Couluris, DO (Peds)
- University of Tennessee/LeBonheur, Memphis, Tennessee
Dennis Stokes, MD (Peds)
- University of Wisconsin, Milwaukee, Wisconsin
Diana Quintero, MD (Peds)
Stay tuned for developments on this exciting and growing network!
| PCD Patient Event: San Francisco, CA May 14, 2016
UPCOMING PCD PATIENT EVENT IN SAN FRANCISCO, CALIFORNIA:
The American Thoracic Society Public Advisory Roundtable (ATS-PAR) is proud to present their 10th annual “Meet the Experts” Patient/Family Event at the San Francisco Marriott Marquis Hotel on Saturday, May 14th 2016 from 10:00 a.m. - 2:00 p.m. As an ATS-PAR member organization, the PCD Foundation is delighted to announce that Dr. Carlos Milla (Lucille Packard Children’s Hospital, Stanford) and Dr. Steven Brody (Washington University School of Medicine, St. Louis) will be available to meet with patients during this event.
When: May 14th, 2016 from 10:00 am – 2:00 pm
Where: Marriott Marquis Hotel, San Francisco
Cost: Free and lunch provided, but registration is required
This interactive session will be an opportunity for one-on-one discussion with nationally renowned experts in PCD. Questions are encouraged, just note that individual medical consultations cannot be provided at this event. PCD Foundation board members will also be present and available to meet with patients and provide information about the foundation, as will other patients.
This is a free event for patients and family members with complimentary parking, lunch, and oxygen refills for attendees with portable oxygen needs.
Please RSVP as soon as possible to ensure all attendees will be accommodated! We look forward to seeing you there!
Please RSVP by May 1st to Heidi Bjornson-Pennell, PCDF Board Member:
RSVP must include the first and last name of every person in your group and your city and state. Please provide an email if possible. Thank you!
Please click here for more information!
| A 30 gene PCD diagnostic panel is now available
Exciting news from Invitae!
A 30 gene PCD diagnostic panel is now available. It is estimated that this panel will pick up approximately 70% of all PCD genetic defects.
Pricing for this expanded panel is $1500 for individuals who have insurance to cover genetic testing. For patients without insurance or whose insurance does not cover genetic testing, Invitae is offering an out-of-pocket price of $475. There is also discount contract pricing for institutions and academic centers. Please contact Invitae directly for more information related to pricing.
This is a seminal event for the PCD community. The availability of affordable, reliable genetic test will change the way PCD is diagnosed and will accelerate efforts to understand this complex disorder.
For more information on ordering tests or for international inquiries please contact Invitae at
| PCDF CARE Day: U of Michigan Oct. 18, 2015
Please join us for a CARE (Clinical Centers Awareness and Regional Education) Day sponsored by the University of Michigan Pediatric and Adult Pulmonary Divisions and the PCD Foundation.
Meet Dr. Thomas Saba and Dr. Thomas Sisson, the PCD Center Directors, and their colleagues and learn more about goals of the PCD Clinical Centers Network and services offered for families affected by PCD. There is no cost for this meeting but reservation is required. A light dinner will be served. Please register by September 13th at the link below.
For more information and registration Click Here!
Cross Infection Guideline & Waiver
| Call for Scientific Abstracts and Case Reports 2015
PCD On The Move: Advances in Primary Ciliary Dyskinesia Research, Diagnosis and Care
August 26-28, 2015
CALL FOR SCIENTIFIC ABSTRACTS AND CASE REPORTS
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.
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.
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.
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.
- 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.
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.
Abstracts are to be submitted in Microsoft Word Format to the PCD Foundation c/o Lynn Ehrne at
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
- Title of abstract
Friday, July 31, 2015
5:00 PM, Eastern Time
Late submissions will not be considered