Leber Hereditary Optic Neuropathy

Overview

BBK Worldwide was hired to make study participation possible, let alone easier, for a group of patients with an acute need for just the type of support that only a company with BBK’s depth and versatility could provide — patients experiencing vision loss due to Leber Hereditary Optic Neuropathy (LHON).

LHON is a life-changing neurodegenerative disease that leads to irreversible blindness in teens and young adults, curtailing ability to perform daily activities, reducing autonomy and altering life choices.

BBK was brought in to facilitate smooth international travel logistics for visually impaired and often underage patients from all over the world.

The added challenge: Our campaign overlapped with the onset and height of the COVID-19 pandemic, which severely limited travel options and created quarantine barriers that had to be overcome.

Challenges 

• The disease’s rarity, combined with an eligibility requirement for a specific mutation.

• A ticking clock: Patients needed to enroll within one year
  of vision loss in the first eye and prior to vision loss in the second — and once the treatment series began, it couldn’t be interrupted.

• Patients’ visual limitations, and the need to unburden site staff from travel logistics to enable a full-time focus on intensive patient support.

• The necessity of mostly international travel, given disease rarity, combined with a global pandemic that severely limited standard travel options.

• A significant percentage of participants unable to use standard reimbursement cards due to international trade regulations or sanctions.

PROGRAMS

Concierge Travel Management

Study Expense Reimbursement

STUDY REGIONS

Asia Pacific

Middle East

North America

Western Europe

Solutions

Despite the complex challenges, BBK was able to support all 90 study participants throughout their participation.

Through our study-related travel program, TCN^TM Arrive, patient-centric considerations included identification and booking of hotels able to accommodate participants’ special needs, specialized ground transportation drivers capable of enhanced services and COVID-19 preventative measures.

Our concierge team provided interpreters / study ambassadors whenever and wherever needed — at in-person or remote study visits and throughout study travel, especially vital given participants’ visual impairments (some severe).

BBK’s study expense reimbursement program, TCN^TM Card, served all patients, including providing alternative services for citizens in countries where debit card issuance is restricted due to international trade regulations or sanctions.

Impact

Patient usage of travel support exceeded 100%, since sites turned to our TCN^TM Arrive services to support prescreening visits before the study even began. Our concierge specialists booked over 500 trips for participants and companions, with frequent international travel that required assistance with passports, visa procurement and special letters of support to override country-entry restrictions — in a remarkably condensed timeframe. Thirteen linguists supported 19 patients requiring interpreter assistance at sites in Belgium, Taiwan and the U.S.

TCN^TM Card was embraced enthusiastically by site staff and participants and provided reimbursements for over 800 visits.

BBK provided exceptional door-to-door travel management services tailored to the specific needs of each participant, both before and during the COVID-19 pandemic — despite a radical drop in travel and accommodation options at its height.

BBK’s services transcended enormous challenges, with high-stakes medical needs, to ensure seamless study continuity.