July 2024- IROS, an Abu Dhabi-based contract research organization (part of the M42 group), has partnered with Prilenia Therapeutics, a clinical-stage biotech company, and the International Huntington’s Disease Association (IHA) to plan the first-ever clinical trial for Huntington’s disease (HD) in the UAE and MENA region, using Prilenia’s investigational drug, pridopidine.
In the presence of His Excellency Mansoor Ibrahim Al Mansouri, Chairman of the Department of Health – Abu Dhabi (DoH) and Dr. Fahed Al Marzooqi, Deputy Group Chief Operating Officer of M42, the agreement was signed at the DoH stand during the BIO International Convention in San Diego by Islam ElTantawy, General Manager at IROS, Dr. Michael Hayden, CEO of Prilenia and Svein Olaf Olsen, President of the IHA.
Aligning with Abu Dhabi’s healthcare aspirations for genetic rare disease care, the three organizations collaborating on the clinical study under consideration, aim to raise awareness about HD and to help bring innovative treatments to support patients and their families. This effort is part of Project NADER (Needs Assessment and Therapeutics Development for Rare Diseases), backed by DoH, which focuses on assessing needs and developing treatments for rare diseases.
HD affects up to 14 per 100,000 people worldwide, causing abnormal movements, psychiatric issues and severe cognitive decline. Caused by a mutation in the huntingtin gene it leads to the degeneration of neurons in the brain. As it advances, people gradually lose the ability to maintain employment, manage finances, and carry out essential daily activities, including self-care or simple household tasks. HD is often underreported and misdiagnosed, particularly in the MENA region, making the trial vital for raising awareness and improving patient outcomes.
Dr. Asma Ibrahim Al Mannaei, Executive Director, Research and Innovation Center at the DoH, said: “In reflection of our commitment to address global healthcare challenges and accelerate innovative solutions, the Department of Health – Abu Dhabi is proud to witness the launch of the region’s first clinical trial on Huntington’s disease.”
Dr. Fahed Al Marzooqi, Deputy Group Chief Operating Officer of M42, said, “This collaboration brings hope to the Huntington’s disease community. There is a crucial need for more research and data on Huntington’s disease in the UAE and MENA as well as a need to ensure its populations are properly represented in clinical trials. At M42, we are committed to delivering specialized care and forming the right partnerships to improve healthcare delivery.’’
Svein Olaf Olsen, President of the IHA, said, “This is the first time a clinical trial in Huntington’s Disease is planned to take place in the region; this collaboration with IROS and Prilenia will aid our understanding of the disease. Unfortunately, many people with HD are regularly misdiagnosed with Parkinson’s or a mental illness, leading to significant frustrations and a decreased quality of life for both patients and their families. By focusing on Huntington’s disease, we are taking an important step toward raising awareness of brain diseases while exploring opportunities to delay their progression and improve the quality of life for those with genetic disorders.”
Islam ElTantawy, General Manager at IROS, said, “Finding and enrolling the right patients is critical to the success of any clinical trial, but it’s an especially significant hurdle when it comes to rare diseases like Huntington’s. Our partnership with Prilenia Therapeutics and the International Huntington’s Disease Association where we can leverage its deep connections within the Huntington’s community, will ensure we effectively reach and recruit the people who need these treatments the most.”
