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Amyotrophic Lateral Sclerosis


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Key Takeaways

The VALOR study sought to enroll patients with amyotrophic lateral sclerosis (ALS) who had a mutation in the superoxide dismutase type 1 (SOD1) gene.

Because patients may not have known whether they had the mutation, genetic testing was included as part of the eligibility screening.

amyotrophic lateral sclerosis

A global study, with an estimated 35,000 individuals living with ALS just in the United States and the United Kingdom alone, the opportunity resonated with a large percentage of the patient population interested in genetic testing.


The campaign connected with the target audience; advertising alone drove over 200,000 visitors to the study website.



Only about 2% of ALS patients have a mutation in the SOD1 gene.

Patients are burdened by having to travel to and from study appointments.

Patients are concerned about the possibility of being randomized to the placebo group.



Because many ALS patients do not know if they have a mutation in the SOD1 gene, they may not immediately identify with the study opportunity.



BBK developed materials to keep the study top of mind at global study sites and to support patient identification and consent. Our patient and referring-physician materials were informed and approachable. They helped staff to quickly identify potentially eligible patients against key criteria while also providing patients and caregivers with the information necessary to foster consent.

We strategized to maintain a brand consistency that would resonate across multiple studies within the sponsor’s ALS pipeline.

Physician Materials






BBK used a detailed prescreening process designed to rank and identify potential participants based on their knowledge of their condition, including ALS diagnosis history, SOD1 testing status, history of familial ALS and willingness to participate in clinical research. As a result, over 1,700 highly qualified referrals were generated, identified and sent along to sites for additional follow-up.

  • Sites_ICON 44 SITES

  • Increase-Referrals_ICON-1 1,700+ QUALIFIED REFERRALS

  • Countries-ICON-1 14 COUNTRIES

  • Participants_ICON 227 PATIENTS

Travel and Reimbursement

BBK supported study engagement by providing travel and reimbursement services so that patients could be reimbursed immediately anywhere in the world. BBK’s concierge travel support arranged services like in-country and cross-border travel for patients and their caregivers or legally authorized representatives and providing hospital beds to patients during their travel.



Concierge Services

Ambulance Transports

Site: Île-de-France, France
A patient in France required an ambulance transport to and from study visits as their condition progressed.

  • The Concierge team was able to locate and source a local ambulance to transport patients in the area.
  • With this special circumstance, BBK was able to provide the payments for the transports directly to the local vendor as the site was unable to afford the cost of the expenses.

Wheelchair Accessibility

Site: Quebec, Canada
The Concierge team worked extensively over a number of visits to assist the patient and caregiver as the patient's mobility declined throughout their study participation. Support included:

  • Assistance in sourcing and establishing a new wheelchair-accessible vehicle partner in the Quebec market
  • Provision of wheelchair rentals and assistance in and around the airport, as the caregiver also needed assistance pushing the wheelchair
  • Provision of handicap-accessible rooms with walk-in showers

Hospital Bed Rental

Hospital-BedSite: Florida, United States
A member of the site staff in the US requested assistance from BBK’s Concierge specialists  to help source a hospital bed that could be rented for one of their patients.

  • The Concierge specialists coordinated the rental bed, which included a trapeze bar, for use in the hotel room that was booked by BBK.
  • The Concierge specialists followed the same process for all of the patient’s subsequent visits.

Study Program-Level Support

To establish the sponsor as a sponsor of choice in the ALS treatment space, we supported their pipeline of related studies with branding and material development. Because the other studies were phase 1, those programs were given study logos but remained identified by protocol number as opposed to a study name. Their logos differentiated each individual study while maintaining a strong brand consistency and presence across all study materials.


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