ebcare.patientcrossroads.org
The
Epidermolysis Bullosa Registry was originally created in September of
1986 through Rockefeller University in NYC, NY. The goal was to develop
a list of EB patients with various forms of both inherited and acquired
forms of EB. Also, to create a data bank of 1) clinical 2) historical
and 3) genetic information pertaining to these patients and to gather
donated tissue biopsies, which include selected cells and DNA from
selected EB patients to establish a permanent tissue/cell bank, from
which researchers can study and to further research of all types and sub
types of epidermolysis bullosa. Below is the link to the clinical
trials website that gives the basic information for the original EB
registry study, which has since been completed and closed.
http://clinicaltrials.gov/ct2/show/study/NCT0000476
Below are a few excerpts from the EBCare Registry (ebcare.patientcrossroads.org) which is the 'new' EB registry:
"a single, online database that collects and stores
information provided by participants and includes personal and clinical
information provided by patients with all forms of epidermolysis bullosa
(EB). This information will be kept confidential by EBCare, LLC. The
Registry is a research project that collects and stores information, and
makes this information available to qualified researchers and others
interested in studying the disorder with a view to diagnosing,
characterizing, and treating the disease."
"The Registry facilitates research by all qualified investigators who
wish to study patient populations that are well characterized by
accepted criteria. Once established, a Registry is a research resource
that can support many diverse types of investigations, including
clinical trials, performed by qualified researchers to help diagnose and
treat disease."
"By sharing your information with the EBCare Registry, you are helping
create this valuable resource that does not currently exist." - information provided by EBCare Registry
"By enrolling in the Registry, you are in no way committing
yourself to participate in any Registry-related research project. Your
personal and confidential information will be protected in accordance
with applicable United States and international privacy and security
regulations such as the Health Insurance Portability and Accountability
Act of 1996 (HIPAA) and the European Union Data Directive as well as
applicable state or national laws."
"Vision
The vision for the Registry is to establish a global resource that will
ultimately serve as a repository of information gathered from people
affected by all forms of EB."
"Goal
The goal of the Registry is to facilitate communication between affected
individuals, clinicians involved in their treatment, members of the
health care community, and scientists who strive to advance research on
the diagnosis and treatment of all forms of EB."
"Objectives
The objectives of the Registry are to:
1. Characterize and describe the experiences of individuals affected by all forms of EB.
2. Identify EB treating physicians.
3. Assist the development of clinical care guidelines.
4. Facilitate in the planning of clinical trials.
5. Facilitate clinical trials by informing the EB community in a
timely fashion about new EB clinical trials and research projects."
"By achieving these objectives it is hoped that the Registry will
accelerate the development of effective therapies for all forms of EB."
"Who Maintains and Funds the Registry?
EBCare, LLC maintains and coordinates the Registry and is guided by a
Board of Managers that provides oversight and includes DEBRA
International, DEBRA of America and Lotus Tissue Repair, Inc. Funding
for the Registry is provided by Lotus Tissue Repair, Inc."
"How Can I Participate in the Registry?
The EBCare Registry was launched in February 2012, initially in English.
In the future, we plan to develop versions of the Registry in other
languages to facilitate more international participation. The Registry
is accessed through the Internet and to participate you must register
online and complete an easy-to-use questionnaire, which will be
accessible to you after you register."
All information in parenthesis was provided from EBCare registry
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