UNC Autism Research Registry Consent Update
We are contacting our UNC Autism Research Registry (“The Registry”) members about a new approach to improve research on the health/medical conditions of people with autism by using electronic medical records.
When you originally signed consent for The Registry, you agreed to allow your child’s autism related information to be used for research purposes. Advancements in the field of autism research have shown that autism can affect many aspects of a person’s overall health. Using electronic health records will allow researchers to study these relationships in more detail.
If you give consent, we will link your child’s Registry record with his/her electronic medical record in the UNC Healthcare System. This can help us recruit more effectively for studies that focus on issues experienced by people with autism such as GI/digestive, genetic, neurological, endocrine, mental health, and other medical symptoms and conditions.
We anticipate using data from electronic medical records to: 1) identify commonly diagnosed medical conditions of people with autism, 2) determine eligibility for specialized studies in the future, 3) study individual factors that could predict health outcomes or improve treatment response.
Types of data that we could request from electronic medical records are appointment dates, diagnostic codes, doctor specialty, medications, and procedures.
We will use a unique ID to link your Registry record with electronic medical records at UNC Health Care or one of our affiliate hospitals or clinics. To be clear, you are not giving consent for the Registry staff to access your child’s medical record. The Registry will make requests to UNC Healthcare EMR for specific research questions and receive applicable information. Those requests must be approved by the UNC Health Care Governance Board Oversight Committee to assure protection of sensitive information. For privacy protection, we will use IDs (not names) to request information.
You are not required to give consent for the EMR linkage to stay in the Registry. As always, being in the Registry is voluntary, and you may withdraw your consent at any time. Click here to show a list of frequently asked questions.
If you need clarification or additional information, we encourage you to contact us.
Macie Rush | UNC Autism Research Registry | 919-962-5942 | macie.rush@cidd.unc.edu
What if UNC Healthcare Systems is not our provider?
This consent would apply if you sought services in the future at a UNC affiliated site.
The UNC Health Care System now includes an increasing number of affiliate hospitals and clinics:
- All UNC TEACCH Autism Program Regional Centers
- UNC REX Healthcare
- UNC Memorial, Neurosciences, Women’s, Children’s and Cancer hospitals
- UNC Hillsborough campus
- Chatham Hospital
- Johnston Health
- Pardee Hospital in Hendersonville
- Caldwell Memorial.
- UNC School of Medicine
- Nash UNC Health Care
- Wayne UNC Health care
- UNC Rockingham Health Care
- UNC Lenoir Healthcare
- Onslow Memorial Hospital
- UNC Physicians Network (36 practices all over NC and 166 physicians)
- UNC Senior Alliance
Who would have access to this data?
The Registry staff would have access to the Unique ID and would initiate medical data requests on behalf of approved research projects. Approved research projects would have access to the data needed to conduct their study.
Will I know when my child’s record is being accessed?
No. We will not contact you except when you are eligible to participate in a research study.
Who would know if my child participated or not?
The Registry staff is responsible for tracking study participation. This information is not disclosed.
Would this affect my insurance?
No. We will only be requesting information that is already part of your medical record. The Registry does not have access to your medical record and therefore cannot change any information in it.
May I withdraw my consent for the EMR linkage?
Yes. To withdraw consent, contact the Registry.
How can I get more information?
Macie Rush | UNC Autism Research Registry | 919-962-5942 | macie.rush@cidd.unc.edu
Please indicate your preference by completing this form and clicking the SUBMIT at the bottom of the page. (You may also update consent by phone or by printed reply form. Call: 919-843-3527)
RESEARCH REGISTRY CONSENT ADDENDUM
Please confirm your consent preference
Name of Registry Member(s) diagnosed with an autism spectrum disorder:
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Date(s) of Birth:
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Authorized Signee: Please provide your Full Legal Name
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Email Address:
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