CFPG Adult Cystic Fibrosis Center

CF HEALTH CARE PROVIDERS
Our CF Pulmonologists are Board Certified in Pulmonary Medicine, Critical Care Medicine, and Internal Medicine

• Daniel T. Layish, MD, FACP, FCCP, FAASM
  (CF Program Co-Director & Medical Director of Clinical Research)
• Francisco Calimano, MD, FCCP
  (CF Program Co-Director)
• Hadi Chohan, MD
• Aymara Del Pino, APRN
• Kathleen Summo, PhD, MSN, RN, CCP
  (Clinical Director of CF and Clinical Research)
  407.841.1100 Ext. 225

Clinical Director of Research and CF

• Kathleen Summo, RN, MSN, CNS, CCP
  407.841.1100 Ext. 225

CF Clinical Coordinator

• cfsupport@cfpulmonary.com
  407.841.1100 Ext. 158

CP Nutritionist

• cfdietician@cfpulmonary.com
  407.841.1100 Ext. 224

CP Mental Health Coordinator

• cfsocialworker@cfpulmonary.com
  407.841.1100 Ext. 224

CF Medical Assistant

• cfsupport@cfpulmonary.com
  407.841.1100 Ext. 107

CF Clinical Research Coordinators

• ksummo@cfpulmonary.com
  407.841.1100 Ext.225

CFPG CF GUIDELINES

Our multi-disciplinary CF team meets no less than weekly to discuss our CF patients. For any questions, please call the Adult CF Clinic Coordinator at 407.841.1100 ext. 158.

• On CF clinic days the phones are forwarded to our triage nurse phone line at 407.841.1100 ext. 123
• Email non-urgent matters to cfsupport@cfpulmonary.com
• For urgent medical issues contact the triage nurse phone line at 407.841.1100 ext. 123
• Upon discharge from hospital, contact the CF Medical Assistant at 407.841.1100 ext. 107 for a follow up appointment or email cfsupport@cfpulmonary.com
• Get your blood work drawn at least one week prior to your appointment
• If you have home spirometer, have your results ready during telephone visits
• Bring in all recent lab work results and/or hospital records to your office visit
• Bring a list of your current medications to your office visit
• We require 72 hours to answer emails and address prescription refills
• If you have MRSA or Cepacia, notify the CF Coordinator at 407.841.1100 ext. 158 or cfsupport@cfpulmonary.com

CF SERVICES
Our Adult CF Program provides comprehensive care, including, but not limited to:

• Transplant management
• Chest x-rays, Scans: CT & Dexa
• Education: Patient, family, friends
• Cultures: throat & sputum
• Pulmonary Function Testing
• Airway clearance techniques
• Nutritional status monitoring
• Emotional support and social services
• Pediatric to Adult transition management
• Access to patient support groups, assistance programs, waiver programs and CF community organizations

CF RESEARCH
Our Research Department is a leader in the field of CF clinical trials. Working with the Cystic Fibrosis Foundation’s Therapeutic and Diagnostic Network we have conducted numerous studies to advance the care of CF patients.

YOUR APPOINTMENT

Your appointment will be held during our CF clinic. On that day you will meet the CF Clinic Coordinator, Registered Dietitian, Mental Health Coordinator, Respiratory Therapist, Medical Assistants, Research Coordinator (if applicable) as well as your CF Pulmonologist, or CF APRN. CF guidelines currently recommends office visits every 3 months.

Your dedicated CF Pulmonologist will provide a comprehensive assessment and discuss your health status and care plan.

Your CF Clinic Coordinator will discuss your treatments and fully review your medication to determine the availability of patient assistance and support programs.

Your Respiratory Therapist will have you perform complete pulmonary function testing and review your airway clearance techniques.

Your Registered Dietitian will assess your diet and determine the need for dietary changes, enzyme dosing adjustment and supplements.

Your Mental Health Coordinator will help you resolve insurance issues and assist with referrals to other specialty practices as needed.

If you require an urgent appointment and your regular CF physician is unavailable, you will be offered the first available CF provider (physician or ARNP) to expedite your care.

CFPG CF AWARDS

Cystic Fibrosis Foundation: Outstanding Partnership Award: Adult CF Program: 2014
Cystic Fibrosis Foundation: Outstanding Partnership Award: Adult CF Program: 2015
INC Clinical Research: Clinical Research Site Award: 2016
Cystic Fibrosis Foundation: North Central Florida Chapter Appreciation Award: 2018 Cystic Fibrosis Foundation: North Central Florida Chapter Appreciation Award: 2019

CFPG CF PUBLICATIONS

CF Lung Transplant Transition Regional Dissemination Network (CF LTT RDN): Dec.7-9, 2020:
Central Florida Pulmonary Group: Improvement Theme: Team Dynamics: Transition to Transplant-Between Referring and Transplant:
D. Layish, MD, K. Summo PhD, MSN, RN, D. Serr, E. Tulme, Heather Fogle-Shaver, LCSW, C. Chemtob MS, RD, LD, B. Reid MS-HCI

Pediatric Pulmonary, Supplement 45, 2016:
QUALITY IMPROVEMENT PROJECT TO IMPROVE SCREENING PROCESSES FOR CYSTIC FIBROSIS RELATED DIABETES:
Chemtob, C. H., Layish, D., Calimano, F., Summo, K., Serr, D.
CF Center: Central Florida Pulmonary Group, Orlando, FL USA

Pediatric Pulmonology, Supplement 45, 2016:
POPULATION PHARMACODYNAMIC MODELING OF DISEASE PROGRESSION IN CYSTIC FIBROSIS SUBJECTS: Hartman, S., Layish, D., Prately, R.E., Bredberg, U., Haseltine, E., Beusmans, J., Lesko, L. J., Trame, M.N.,
1. Pharmaceutics, University of Florida, Orlando, FL, USA
2. Central Florida Pulmonary Group, Orlando, FL, USA
3. Translational Research Institute for Metabolism and Diabetes, Orlando, FL, USA
4. Vertex Pharmaceuticals, Boston, MA, USA

Pediatric Pulmonology, Supplement 45, 2016:
PHASE 1 INITIAL RESULTS EVALUATING SAFETY, TOLERABILITY, PK AND BIOMARKER DATA USING PTI-428, A NOVEL CFTR MODULATOR, IN PATIENTS WITH CYSTIC FIBROSIS:
Mouded, M., Layish, D., Sawicki, G. S., Milla, C., Flume, P.A, Tolle, J., Vansaghi, L., Watson, C., Munoz, B., Bhalla, A., Ivarsson, M., Lee, P.
1. Proteostasis Therapeutics Inc. Cambridge, MA, USA
2. Boston Children’s, Boston, MA, USA
3. The Stanford Cystic Fibrosis Center, Stanford, CA, USA
4. Medical University of South Carolina, Charleston, SC, USA
5. Vanderbilt University Med Center, Nashville, TN, USA
6. Central Florida Pulmonary Group, Orlando, FL USA
7. Quintiles, Overland Park, KS, USA

LEARN MORE
Cystic Fibrosis Foundation: www.CFF.org
North Central Florida Chapter of Cystic Fibrosis Foundation
1850 Lee Road, Suite 111, Winter Park, FL
407.339.2978
email: north-central-florida @cff.org
National Institutes of Health:www.clinicaltrials.gov

PATIENT ASSISTANCE PROGRAMS
Click here for Cystic Fibrosis Links
Click here for Cystic Fibrosis Adult Care: Consensus Conference Report

OPPORTUNITIES TO DONATE

Cystic Fibrosis Foundation

Trikafta Information for our CF patients

Dear CF Patients:

The FDA has recently approved their new triple combination therapy for CF patients aged 12 years and older, with at least one F508del mutation. CFPG is excited to have a new therapy available to help more than 90% of people living with CF. We will work towards providing this medication as quickly as possible.

Please be aware that Trikafta is currently approved for patients having at least one ^F508 genotype along with any other second genotype. We certainly expect most people will want to start this exciting new medication, but the decision is up to you. If you have any questions or concerns, please speak with your CF provider at your next clinic visit.

General Information:

1. We are processing requests in alphabetical order and date of receipt.
2. If you are not currently participating in the CF Registry Database, it will take us MUCH longer to access your missing information. Please consider participation in this valuable database as it helps CFPG help you quickly and efficiently.

Trikafta Information