Bahrain Patient Engagement Milestone: patientprimary
The patientprimary team have hit another patient engagement milestone by assisting a patient from a small town on the Island country of Bahrain. This Island off the coast of West Asia, near Qatar, is a very long journey from the study site in the United States that recruited the patient for a vital clinical trial.
The Challenge
The patient was recruited for a trial investigating a treatment for male patients with Cerebral adrenoleukodystrophy (cALD). This rare genetic disease affects the brain and can lead to many complications like seizures, blindness, deafness and even death. While there is now a gene therapy treatment for children with this disease, there is no effective treatment for adults with the disease, so it is extremely life-changing for this patient to be enrolled in this trial.
The Solution
Prior to the patient travelling, the navigator team spent time on phone calls with the patient to make sure they understood their needs and preferences and had all the detailed logistics sorted out for their long journey away from home. The ondemand team assisted with the payment of fees for the patient’s and caregiver’s visas and supported the logistics of aligning the visit and travel schedule with the study site. Navigators ensured the patient’s comfort on the long journey from Bahrain to Saudi Arabia, then to Germany and lastly on to the United States – arranging seating with adequate legroom and not including flights with layovers that lasted too long. They also arranged appropriate accommodation for their 3-week stay on their first trip.
The Outcome
The navigator team stayed in contact with the patient on an almost daily basis while they were travelling and in the United States, to help support them during this important journey. They will continue to support the patient while they journey back and forth to the United States for up to 3 years, with hopes they will successfully complete the trial. mdgroup has high hopes that this trial and their support will improve the patient’s quality of life while they live with this debilitating disease.
Without mdgroup services and the effort of the team this patient would not have been able to participate in this crucial trial.
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