Robert’s Program | Services

Our interdisciplinary team brings together leading experts in the field of SUDP. Our directors and specialists have years of experience in clinical practice and academic research in SUDP. We will support you and your family as we try to make sense of your loss.

Robert’s Program offers clinical assessment and diagnostic tests free of charge to any child who has died suddenly and unexpectedly. Following written consent, we offer the following services:

• an undiagnosed disease approach to your child’s underlying medical vulnerabilities that plausibly contributed to death
• an extensive clinical history review of your child’s medical records and mother’s pregnancy and delivery records
• multi-generation family tree with complete medical history of your family
• in depth genetic evaluation of the child and parents to understand cause of death and risks to other family members
• standardized approach to autopsy, including specialized, advanced testing not typically available
• a final report thoroughly explaining the findings of our assessment
• referrals for the evaluation of findings that may affect the health of family members
• availability to answer any questions and address concerns throughout the investigation
• accompanying bereavement support incorporated into every in-person encounter and through parental bereavement support groups

For families in Massachusetts, these services are offered in person. Due medical licensure restrictions, we are unable to explicitly recommend medical care outside of Massachusetts, but arrangements can be made involving the family’s local health care providers.

For families located outside of the United States, certain important restrictions apply on the return of any clinically actionable findings that are found. In addition to the fact that the healthcare providers in Robert’s Program do not hold medical licenses to practice outside the state of Massachusetts in the United States, your country may require that laboratory results be generated in a clinical laboratory certified under your country’s national laws before being returned to you or your treating clinician. We must therefore require the engagement of physicians from your locality who are aware of the applicable regulatory requirements in your country and who can assist us in the sharing of any clinically actionable findings that may be found. There is no guarantee that we will be able to return clinically actionable findings in each country.

Bereavement support

Robert’s Program provides bereavement support to Massachusetts families who are enrolled in the program, during the initial months and beyond. This support includes meetings with a bereavement specialist, either individually or as a couple, support groups with other bereaved parents who are also enrolled in Robert’s Program, scheduled phone calls, and referral information. We also provide general information about coping with grief in our bereavement guide “When Grief is New: A guide for parents dealing with the sudden, unexplained death of a young child."