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SADS Research Policy

The SADS Foundation strongly encourages genetic research in conditions that may lead to sudden cardiac death in the young. We play a vital role as a link between researchers and families. As we work with more researchers assiting to market and recruit for openly enrolling studies, we have developed the following policy.

SADS Policy for Marketing of Open Research Studies

We will publish announcements for studies relating to cardiac conditions that may cause sudden death in the young (or any other study that falls within our mission), with a general explanation of study protocols.

a. We will not charge for publication in our newsletter, e.newsletter or online on our website and social media platforms.
b. We will not charge for direct emails sent to SADS clients.

c. We require information to be provided by the study as to how many contacts were made, participants enrolled, etc. as a result of our publication and promotion of the study.
d. We will also require the Sudden Arrhythmia Death Syndromes Foundation to be referenced as a contributor in any publication of the study.

2. SADS will also notify our clients via standard USPS mail of a study (as above) with open enrollment in their area or one that they may qualify to join for a fee.

a. We will charge based on our actual costs, including labor.

b. We will require information and credit as in #c & d above.

3. Any interested participants will be referred to contact coordinator of study project in order for enrollment. SADS staff members will not participate in active enrollment, only recruitment.

Download the policy document

For questions or comments, please contact Alice Lara at Alice@sads.org or call 800-STOP-SAD.

Children and research: http://www.childrenandclinicalstudies.org/

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Warning Signs
- Family history of unexpected, unexplained sudden death under age 40.
- Fainting or seizure during exercise, excitement or startle.
- Consistent or unusual chest pain &/or shortness of breath during exercise.

SADS Research Policy

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Warning Signs