Outreach
In addition to the ongoing funded programs, we are working with a rare disease support community, as well as disseminating next-generation sequencing expertise to a wider community.
Book on Metagenomics approaches: Metagenomics for Microbiology
Helping people to get familiar with the metagenomics approaches is the target of this book. In collaboration with Maria Rivera, co-editor, Jacques Izard has designed a short format book to facilitate the conceptual design of metagenomic studies and analysis of metagenomics outputs. It is now available at our publisher web site Academic Press/Elsevier as well as other resources. More details about the book and a partial list of world-wide distributors is available at the following web site: metagenomicsformicrobiology.com.
Databank on rare disorders
Why are we involved?
These diseases have a known genetic background but the triggers and the modulators of the disease progression are unknown. As the microbiome is a functional component of the human biome, we are providing support to understand the possible interactions involved.
What is the platform?
We are using the recently developed and available online registry: The Cancer in Our Genes International Patient (CGIP) Databank. This effort sprung from the collaboration of the VHL Alliance and researchers from multiple laboratories and specialties. This effort was extended to other rare diseases in hopes to find a cure for kidney, pancreatic, and adrenal tumors as well as these diseases.
The data that is collected covers the following topics: demographics, medical history, genetics, nutrition, exercise, neurology, oral health, tobacco use, skin, heart, lung, kidney, male and female reproductive tract, mood (emotional health), digestive issues and associated organs such as the pancreas, thyroid, pheochromocytoma and paraganglioma. The intention is to collect prospective information as well as historical information within affected families of both living and deceased members. All the processes follow national regulatory approvals for collection of medical data.
Which diseases are targeted?
The CGIP Databank is collecting information about von Hippel-Lindau (VHL), Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC), Birt-Hogg-Dubé (BHD), Succinate Dehydrogenase Complex (SDH) and other related conditions. The diagnosis must have been confirmed by a physician.
How to participate?
Please connect concerned individuals and families to the von Hippel-Lindau (VHL) Alliance: http://www.vhl.org
The CGIP Databank is online at the following address: www.vhl.org/databank.
Help to fund our associated projects: Support Our Goals.
These diseases have a known genetic background but the triggers and the modulators of the disease progression are unknown. As the microbiome is a functional component of the human biome, we are providing support to understand the possible interactions involved.
What is the platform?
We are using the recently developed and available online registry: The Cancer in Our Genes International Patient (CGIP) Databank. This effort sprung from the collaboration of the VHL Alliance and researchers from multiple laboratories and specialties. This effort was extended to other rare diseases in hopes to find a cure for kidney, pancreatic, and adrenal tumors as well as these diseases.
The data that is collected covers the following topics: demographics, medical history, genetics, nutrition, exercise, neurology, oral health, tobacco use, skin, heart, lung, kidney, male and female reproductive tract, mood (emotional health), digestive issues and associated organs such as the pancreas, thyroid, pheochromocytoma and paraganglioma. The intention is to collect prospective information as well as historical information within affected families of both living and deceased members. All the processes follow national regulatory approvals for collection of medical data.
Which diseases are targeted?
The CGIP Databank is collecting information about von Hippel-Lindau (VHL), Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC), Birt-Hogg-Dubé (BHD), Succinate Dehydrogenase Complex (SDH) and other related conditions. The diagnosis must have been confirmed by a physician.
How to participate?
Please connect concerned individuals and families to the von Hippel-Lindau (VHL) Alliance: http://www.vhl.org
The CGIP Databank is online at the following address: www.vhl.org/databank.
Help to fund our associated projects: Support Our Goals.