News, Articles & Research -
Rare Genetic Steroid Disorders Consortium & Registry
June 29, 2006
The Rare Genetic Steroid Disorders Consortium needs your help.
The Rare Disease Network website includes a Contact Registry for the Rare Genetic Steroid
Disorders Consortium. The Contact Registry is a secure, computerized
database held by the data coordinating center that is a member of this
consortium grant.
By registering on the Contact Registry, registrants do not commit
themselves, their children, or their friends to participate in research.
They are simply notifying this computerized, private registry of their
interest in being contacted about potential research opportunities that are
being conducted by the Rare Genetic Steroid Disorders Consortium.
When they are contacted by the registry, they will be free to decide
whether they wish to contact the specified researchers in order to be
considered for the project. Since we researchers will have no access to the
Contact Registry and will not know who is in it, we will not know an
individual has been informed about our research until that individual
contacts one of us.
The mere fact that a person joins the Contact Registry signals the NIH
that individuals with these medical condition are interested in seeing
research performed and supported by their tax dollars. The NIH is thus
encouraged when a consortium’s registry has lots of members. Registering in
our Contact Registry shows your support of research directed at improving
care of people with rare genetic steroid disorders.
Rare
Diseases Clinical Research Network
The Rare
Genetic Steroid Disorders Consortium
Rare Genetic Steroid Disorders Consortium - Patient Contact Registry
Downloadable (pdf) version of Patient Contact Registry form
(to print for someone without internet access)
The Rare Genetic Steroid Disorders Consortium (RGSDC) is an international
group of academic medical centers, patient support organizations, and
clinical research resources formed to conduct clinical research in genetic
disorders of steroid metabolism, to improve the care of individuals affected
with these disorders, to train young investigators in the study and care of
these disorders, and to serve as a resource of information about these
disorders.
The RGSDC will establish a large international cohort of patients to
study the following rare genetic steroid disorders:
- 21-hydroxylase
deficiency
- 11b -hydroxylase deficiency
- steroid 17a -hydroxylase
deficiency
- steroid 17b -hydroxysteroid dehydrogenase deficiency
- androgen
receptor defects
- 5a -reductase 2 deficiency
- steroid 3b -hydroxysteroid
dehydrogenase deficiency
- apparent mineralocorticoid excess.
Funded by the National Institutes of Health (NIH), the RGSDC is part of
the Rare Diseases Clinical Research Network. The overall operations of the
RGSDC are directed by Dr. Maria New from the Mount Sinai School of Medicine.
The primary study sites are the Mount Sinai School of Medicine, the
University of Texas Southwestern Medical Center, the University of Lyon, the
University of São Paolo, and the Columbia University College of Physicians
and Surgeons-affiliated New York State Psychiatric Institute.
Remember, we do not know who is on our Contact Registry. By registering
you are not committing yourself, your child or your friend to participate in
research.
You are simply notifying the keeper of this private registry that you are
interested in being contacted about potential research studies conducted by
the Rare Genetic
Steroid Disorders Consortium.
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