Educating Membership about Research - Revision history

Advocacy Admin: /* Helping Members Decide Whether to Participate */

2014-11-12T14:37:43Z

Helping Members Decide Whether to Participate

Advocacy Admin: /* Helping Members Decide Whether to Participate */

2014-11-10T15:28:52Z

Helping Members Decide Whether to Participate

Advocacy Admin: Created page with "Your organization may focus mainly on support activities or fundraising. Even if you don't plan to conduct studies of any kind, your membership may wish to learn about and pa..."

2014-02-26T16:28:14Z

Created page with "Your organization may focus mainly on support activities or fundraising. Even if you don't plan to conduct studies of any kind, your membership may wish to learn about and pa..."

New page

Your organization may focus mainly on support activities or fundraising. Even if you don't plan to conduct studies of any kind, your membership may wish to learn about and participate in studies. In addition, funding agencies make monies available for "studies" or projects that have social or community focuses. Research is an important area of concern, and your organization will need to have—and provide—information about it.

==Helping Members Decide Whether to Participate==

Your members may be eager to participate in research. They may have heard about genes being identified for your condition or other conditions and wish to be tested themselves. They may also be fearful about participation, concerned that genetic testing might cause them to be denied a job or health insurance in the future.

They are right to be concerned. Although there are active policymaking efforts to protect the privacy of genetic information in a meaningful way, there is still a long way to go. You can be an important source of information for your members to help them evaluate various studies and help them understand not only the potential benefit to them and their family members, but also the essential safeguards for their heath information.

Any study that seeks to enroll individuals must provide several protections:

*A robust informed decision-making process and the resulting documentation
*Protection of identifiable personal and health information
*Provision for disposal of samples or information at the termination of the study
*The opportunity to withdraw from or chose to not participate in the study without negative effects on health care or future treatment opportunities

The organization can be the source of information on the various ongoing research studies of your condition—the purpose of the study, the principal investigator (PI), contact information and what is required of participants.
==Internal Links==
*[[Barriers to Rare Disease Research]]
*[[Benefits of Collaboration with Advocacy Organization Community]]
*[[Blood and Tissue Banks]]
**[[Genetic Alliance BioBank]]
*[[Consumers and Researchers: Making It Work|Consumers and Researchers]]
*[[Facilitating Quality Research]]
*[[Funding Research by Others]]
*[[Getting Needs onto the Research Agenda]]
*[[Genetic Privacy]]
*[[Orphan Drug Application]]
*[[Patient's Bill of Rights]]
*[[Promoting Research]]
*[[Registries]]
*[[Research Models]]
**[[Research Model 1: Recessive Disorder]]
**[[Research Model 2: Chromosomal Disorder]]
**[[Research Model 3: Dominant Disorder]]

← Older revision		Revision as of 14:37, 12 November 2014
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	A deciding factor for a participant considering being a part of a clinical trial may be whether or not the data will be shared with them once the study has been completed. When your organization is determining whether or not to conduct clinical trials (or participate as a co-PI), this subject may be something to consider.		A deciding factor for a participant considering being a part of a clinical trial may be whether or not the data will be shared with them once the study has been completed. When your organization is determining whether or not to conduct clinical trials (or participate as a co-PI), this subject may be something to consider.
		+
		+	Ginny Mason
		+
		+	Inflammatory Breast Cancer Research Foundation
		+
		+	“So far our organization hasn't served as a co-PI on any trials but we have helped with trial design and accrual. When working on trial design, we stress the importance of sharing trial data with participants. We make it clear that we understand individual results cannot be shared but aggregate data can be provided to participants.
		+
		+	I represent Indiana University on the Translational Breast Cancer Research Consortium (TBCRC) and the advocates have been pushing for this on all TBCRC studies believing that participants should be given this information. We also think that this will help encourage others to participate in trials.”
		+

	Shelley Bowen		Shelley Bowen

@@ Line 15: / Line 15: @@
 The organization can be the source of information on the various ongoing research studies of your condition—the purpose of the study, the principal investigator (PI), contact information and what is required of participants.
 ==Internal Links==
 *[[Barriers to Rare Disease Research]]