The GALA Study

The Global ALagille Alliance (GALA) Study is a global initiative to create an international database of clinical, genetic, and laboratory data in children and young adults with Alagille syndrome (ALGS). The GALA Study is led by Principal Investigator Dr. Binita M. Kamath, a paediatric hepatologist and senior associate scientist at The Hospital for Sick Children (SickKids) and the University of Toronto in Toronto, Ontario, Canada, in partnership with the Alagille Syndrome Alliance (ALGSA).

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Rare diseases like ALGS are often understudied due to limited funding and small numbers of patients in follow up at a single centre. Additionally, current research initiatives primarily focus on ALGS patients with liver involvement, and there is limited research in adolescents and young adults with ALGS. The GALA Study aims to overcome these limitations by studying an international group of children with ALGS. With a focus on non-liver features, including heart, kidney, and vascular anomalies, we hope to increase our understanding of ALGS and identify the unique challenges and needs of this population, paving the way for better treatment outcomes, management, and quality of life.

 

The GALA Study is composed of more than 100 physicians, surgeons, scientists, and research coordinators from 32 countries around the world. The GALA database differs from a traditional patient registry in that only approved, and verified sites may submit patient data. This is done to ensure anonymity, data integrity, and lawful transfer of patient data. The GALA Study does not accept medical records from patients directly. If you’re interested in contributing your child’s or your own health information, please refer your physician to The GALA Data Coordinating Centre (DCC) Team. 

How does it work ?

Prospective sites apply for local Research Ethics Board approval and submit required legal douments 

Participating sites review medical records of ALGS patients followed at their centre and clinical information is entered into a secure database by authorized users

Data coordinating centre at SickKids in Toronto, Ontario, Canada reviews and analyzes pooled data from all sites

Investigators at participating sites work collaboratively to prepare academic material for dissemination to improve care for ALGS patients

What type of data is collected ?

Demographics

• Birth history

• Genetic reports

• Family history

Clinical Features

• Disease features (liver, heart,     vascular, kidney)

• Laboratory/growth information

• Imaging reports

Clinical Events

• Liver transplantation

• Biliary diversion

• Nutritional support

• Pregnancies