NEWSLETTER NO. 19

Recent Rare Disease Week Event

During Rare Disease Week, Zambon hosted a webinar, Bronchiolitis obliterans syndrome, the Achilles heel of lung transplantation. The findings of a comprehensive research project involving interviews with almost 40 BOS patients, caregivers and healthcare professionals, provide a unique insight and better understanding of those living with BOS. The webinar highlights:

• The emotional impact of a BOS diagnosis and the reality of living with BOS; and
• Detailed insights into the challenges and opportunities of BOS detection, diagnosis, and care

View at: https://www.youtube.com/watch?v=9k2-Mg55qRc

Although this webinar was primarily intended for a US audience, the content may also be of interest for sites outside the US.

Frequently Asked Questions

eFlow device handling (connection cord):

• We recently received some feedback and questions regarding the eFlow handset connection cord, "the grey cord." There have been a few issues regarding loose connectivity. The patients should ensure that the cord is connected both with the handset and the controller as described in the manual. The link below provides detailed instructions on device assembly and its use with L-CsA. This training video may be a helpful tool for site staff to better educate their study participants on device handling and maintenance. Participants can also be reminded that they can access this training video via scanning the QR code on the back of their quick guide at home. The section dealing with the plugging in of the cord starts at 3:20 minutes of the video.
• The connector on this cord may become damaged during repetitive reassembly. If the cord does not connect properly any more or if it looks damaged, patients should contact the sites for a replacement.

http://breath-therapeutics.com/fileadmin/video/TV_B1-2_US_EN_V1_09-2018 

Kudos

Kudos for new randomizations go to the following sites:

• 103 Dr Naik, Study Coordinator Shelby Shull and site team  
• 120 Dr Keller, Study Coordinator Jamaal Saleh and team
• 502 Dr. Gottlieb, study coordinator Ilona Olzik and team
• 706 Dr. Cifrian, study coordinator Pilar Alonso and team 

How Do You Like the Newsletters?

Feedback (positive or constructive) is welcome at boston.sitesupport@zambongroup.com.

Help Needed, Questions or Suggestions?

The development program for inhaled L-CsA for the treatment of bronchiolitis obliterans is very important to Zambon.

LabCorp is responsible for the operational conduct of the studies and your LabCorp contact should be your first point of contact for questions.

However, please do not hesitate to get in touch with us directly if you’d like. Emails addressed to boston.sitesupport@zambongroup.com will reach the Zambon study team and will be answered promptly.

Newsletters are for BOSTON clinical site personnel only and not intended to be shared with patients, trial participants or any external audiences.