For cases to be eligible for entry into this study, your child must meet the following criteria:

• Age from 1 through 16 years.
• Cause of death was determined to be Postinfancy SIDS, Sudden Death in Childhood, Undetermined, Late SIDS, an unclear/vague description of symptoms of “undetermined etiology,” or a diagnosis said to be speculative (i.e. not based on solid evidence) by the pathologist who performed your child’s autopsy.
• Manner of death was ruled as natural, undetermined, or accidental.
• As a parent participating in this study, you must be proficient in the English language.

The San Diego SUDC Research Project will not accept any case that is being litigated in a civil or criminal proceeding. Such a case could be considered at a future date when all litigation has been concluded. Members of the San Diego SUDC Research Project will not participate in any litigation at any time.

If there are any questions regarding eligibility, please contact Elisabeth Anne Haas, MPH Research Associate.

...the Informed Consent Form and Authorization for Disclosure Form. Before beginning participation in the study, it is important to read the  Informed Consent Form and Authorization for Disclosure Form carefully. After reading these forms, please call Elisabeth Anne Haas, MPH Research Associate or Dr. Henry Krous at 858-966-5944, or Laura Crandall at 1-800-620-SUDC. At this time we will ensure that you fully understand the study procedure and will give you an opportunity to answer any questions you may have regarding your participation. If you decide you want to participate you will sign the consent form at this time.

Physician List and Medical Examiner Form

Once you have decided to be in the study, it will be necessary for you to fill out the Physician List and Medical Examiner Form, which provides us with a list of names and contact information for your child’s physicians, including the Medical Examiner that performed your child’s autopsy. We will be sending each of them a letter explaining the study and a copy of your signed informed consent form, which authorizes the release of your child’s records and other materials to Dr. Henry Krous, the Principal Investigator for the study.

PLEASE NOTE: You may be asked to fill out additional forms for the release your child’s documents, if it is required by the physicians’ offices or by hospitals. We will notify you if this is the case.

If you would like to help expedite these medical record requests, you may use this LETTER. If you do use this form, please identify on the "Physician List and Medical Examiner Form" (that you are submitting to the study), which Physicians you have sent this direct letter request form.

After all forms are completed, please return all study documents to:
Dr. Henry Krous
SDSSRP Director
Rady Children's Hospital- San Diego
3020 Children's Way, MC5007
San Diego, CA 92123

If you have any questions about this research:
Please contact Elisabeth Anne Haas, MPH Research Associate, at (858) 576-1700 or email her.

The Family Survey contains some sensitive questions and is not required for your participation in this study. However, it provides us with some very valuable information that will assist us in possibly determining the cause of your child’s death, as well as providing important information for research. If you are uncomfortable with completing the survey, some other options may be: Only filling out parts that you are comfortable with Providing us with a personal written account of your child’s recent and past history Providing us with some information over the phone Download the Family Survey.

The survey and/or other history you provide do not have to be sent to us immediately. It is best if you are able to send them within about 1 month after you have begun participation in the study.

Your participation time in the study, from the time you send in your Informed Consent Form/Bill of Rights and Physician List and Medical Examiner Form, to the time your child’s review is complete, can vary significantly due to some of the reasons outlines below. Please feel free to contact Dr Krous or Laura Hernandez, Research Associate,(contact info below) at any time to receive the status of your review. When your child's review is conducted, you may be contcated and asked further questions about your child, if the Principal Investigator needs the answers for his review.

Please remember, however, that participation time will vary depending on: How long it takes to receive all the necessary records and materials from physicians and the medical examiner Whether your child’s materials will need further review by other SUDC research staff, which is dependent on the details of your child’s case The number of children's cases currently awaiting reviewYou will be notified when the review process is completed and you will be sent a copy of the Principal Investigator’s letter to your child’s medical examiner, describing his findings. Families will be notified by phone or email prior to any written report being mailed to them. In addition, you may speak with the Principal Investigator directly over the phone to have him describe his findings and answer any questions you may have.
Once the Principal Investigator's review is complete, your child's case may possibly be evaluated by additional sub-specialists on the research team. You will be kept informed of this decision through the report you receive from the Principal Investigator as above.