MECFA member programs supported by the We Care program
PILOT AND FEASIBILITY PROGRAM TO DEVELOP A CYSTIC FIBROSIS CARE CENTER OF EXCELLENCE IN TURKEY
Marmara CF Center, Istanbul, Turkey
UNIVERSITY OF Michigan Collaboration
This pilot and feasibility project will establish a care center able to manage all clinical aspects of patients with CF, following best evidence-based care guidelines and adapting them to Turkey’s setting. The program will train a multidisciplinary expert CF Team based in Turkey.
The training will occur under direct and continuous supervision of the University of Michigan (UM) CF Center, both in the US and Turkey. The program will focus on quality improvement (QI) projects with the UM CF team working closely with University of Marmara (UoM) CF Center.
Areas of QI work will include: improving BMI, improving pulmonary function testing, implementing Infection Prevention and Control (IP&C) in the center.
Once the pilot project has been consolidated, we will use the programs approach at another CF Center in Turkey. That will be followed by working with the 2 centers and MoH to develop 5-8 CF Centers, thus creating the National CF Center Network in Turkey. This network will adhere and meet all the requirements of the Cystic Fibrosis Foundation for center accreditation achieving after 5 or more years, a median life expectancy approaching 30 years of age.
This will be accomplished by cementing the National CF Center Network, using evidence-based, state of the art healthcare delivery, operating under strict quality improvement principles, ongoing multidisciplinary team training, and establishing a meaningful clinical research initiative.
Prof. Nasr and the Michigan CF Center Team
In the Middle East there are limited options for specialized CF care mainly due to lack of well trained allied health professionals working in pulmonology departments. There is little to no training available and most hospitals lack adequate budget to cover a dedicated allied health team for CF.
MECFA offers deep dive allied health workshshops at our annual conferences. IN 2020, MECFA will again offer specialized workshops specifically for allied health professionals.
Clinician and Allied Health Training Program
Pediatric Leadership program
Dr Nisreen Rumman, a MECFA founding member, is working to build a CF team at Caritas Baby Hospital in Bethlehem, where most Palestinian CF patients are followed up.
Dr Rumman applied and was accepted to attend the Pediatric leadership program (PLP)
This program is a one-year certificate program developed by the Harvard Medical School, USA and University College London Great Ormond Street, England. It is designed for medical professionals who want to become leaders in pediatrics and provides them with tools to foster innovation at their respective organizations.
Dr Rumman's course is being sponsored by the We Care program and MECFA partners.
Dr Nisreen Rumman and the Caritas Baby Hospital CF Team
As part of the MaMi project, Marmara University CF Center fellow, Pinar Almala Ergenekon, joined the Michigan CF Center in the USA for 2 months training this summer. Prof. Samya Nasr and her CF team at the Michigan CF Center welcomed Pinar in June 2019. The Marmara fellow training included attending UM CF clinics, inpatient rounds, attends bronchoscopies, rotation through PFT lab, sleep clinics and other pulmonary clinics.
Fellow Pinar Almala Egenekon
Cystic Fibrosis Daignostic PILOT PROGRAM to increase CF diagnostics in the Middle East.
Lack of diagnosis plays a major role in the early morbidity rate among CF patients in Egypt, Jordan, Ethiopia and Palestine, particularly in Gaza. In these countries due to low population of diagnosed patients, Health Ministries offer little support for adequate care and essential therapies. In order to successfully lobby governments for support of patients an increase in accurate, early CF diagnosis is necessary.
Establishment of a pilot program to donate diagnostic equipment and testing consumables (10,000 tests, 1,000 with each collection/anyliser system) to 10 hospitals located in Egypt (5), Ethiopia (1), Palestine/Gaza (2) and Jordan (2).
Provide education in the use of the UTSAT CF diagnostic system and diagnosis methods onsite at each receiving hospital.
Host diagnostic workshops for clinicians from participating hospitals during the MECFC 2020 in Muscat, Oman.
Provide tutorial videos on the use of the equipment online free to participating hospitals.
Monitor each hospital to ensure technique and accuracy in diagnosing CF with the UTSAT system.
Use the donation and increase in diagnosed patients to begin lobbying the MoH in each participating country to support CF patients care and essential therapies.
Evaluate the program and develop policies and procedures for donating medication and equipment to MECFA member countries.
The main objective of this pilot program is
to significantly improve clinical outcomes of patients with CF through early and accurate diagnosis.
Several benefits have been associated with early identification of CF, including better growth and lung function, less intensive therapeutic burden and reduced cost of care. Accurate detection permits early access to specialized medical care, and thus results in less morbidity and longer life expectancy.
Increasing education and access to diagnostic equipment and supplies will lead to early detection and improved awareness of the signs of CF among pediatricians and pulmonologists at each hospital.
Palestine and Jordan lobby for essential therapies.
MECFA supports members who are working to lobby their health ministries and government officials to gain access to essential therapies for CF patients.
Palestine and Jordan are now actively engaged with programs to lobby for essential CF therapies supported by MECFA and our partners.