The Raymond A. Wood Foundation hosted our first International Hypothalamic-Pituitary Brain Tumor Patient Registry advisory board meeting today, led by scientific director, Nathalie Kayadjanian. Building a patient registry is one of the research priorities outlined in the RAWF research strategic plan released last year.
The goal of this registry is to create an international central repository of caregivers and patients entered data about living with hypothalamic-pituitary tumor syndromes and to connect to other existing data registries and biobanks. The advisory board participates in early planning of the registry, advises on the development of surveys and protocols, ensures data quality, reviews any reported problems or breaches of confidentiality to make sure they are appropriately reported and resolved and reviews aggregated registry data and use of the registry, reviews all data requests to ensure that the proposed project has scientific merit and will be valuable to the community, and is responsible for deciding what specific data will be given to researchers.
Members of the registry board include researchers, clinicians, industry partners, representatives from rare disease patient organizations, survivors and caregivers.
Johan de Graaf
Survivor and Chair of the Dutch Pituitary Foundation
Netherlands
Lynne Mathies
Survivor and student for MSc Neuroscience and Cognition
Utrech University, Netherlands
Hermann Muller, MD
Head of Department of Pediatrics and Pediatric
Hematology and Oncology
Klinikum Oldenburg, Germany
Soma Sengupta, MD, PhD, FRCP
Harold C, Schott Endowed Chair of Brain Tumor Research and
Co- Director of the University of Cincinnati Gardner Neuroscience, USA
Shuang Liu, Ph.D
CEO and Founder
ConSynance Therapeutics Inc, USA
Shana McCormack MD, MTR
Scientific Director of the Neuroendocrine Center
Division of Endocrinology and Diabetes
Children’s Hospital of Philadelphia, USA
Bradley Richards Ph.D
Caregiver, Assistant Professor, York University
Toronto, Canada
Theresa Strong Ph.D
Director, Research Programs
Foundation for Prader-Willi Research, USA
Aims of the patient registry include:
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Support and accelerate enrollment into clinical trials
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Gather evidence-based data on the viewpoints and unmet needs of survivors and caregivers on the impact of disease and treatments on their quality of life, treatment priorities, and benefit/risk assessment
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Better understand the full spectrum of H-P symptoms, epidemiology, and progression of disease (natural history)
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Improve patient’s care
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Facilitate research
The International Hypothalamic-Pituitary Brain Tumor Registry will be built and launched on the National Organization for Rare Disorders I Am Rare platform with a plan for launch in early fall 2023.
We invite you to consider making a gift to support this important research and to drive our mission to improve outcomes for these rare brain tumor survivors.
