Am I able to request data?
You are able to submit a proposal for data requests, and they will be reviewed by PIDTRAN Coordinators and team.
Which group should i select for sickle cell Disease cases?
Sickle cell cases should be entered as a GENERAL PEDS case.
What if my patient was only seen at diagnosis and does not return?
We understand this is likely to be the case for many patients. Please enter what information that is available in the patient's medical record.
How often should I enter new cases?
We understand this is a very busy time. If possible, please enter Initial Covid-19 Survey once a patient passes Day 7 (7 days after their first positive Covid-19 diagnostic test was collected).
Can I start an entry and finish it later?
Yes. Once you have completed the first 2 screening forms in the initial survey, you should see a "Save and Return Later" button at the top left. Clicking on this button will explain how to save your work and return later.
Can I enter cases with positive tests obtained through drive through screening in our institution?
Yes, please include cases tested at a drive-thru testing center. There is a question on the Day 28 follow-up survey where you can note this. We recognize that there are data limitations for these type of cases, but please include whatever data is available in the survey.
What if I don’t have complete information? Does the registry still want this case entered?
Yes - we would like any information you have for all patients diagnosed and/or treated at your center. Please complete all questions in the survey that you can based on what is available in the patient's medical record. This is a limitation secondary data use design so understand that many fields may be left blank depending on the patient.
How should I complete the symptom checklist for symptoms not present or not documented in the medical record?
These are the criteria we sugget following when selecting not present vs. unknown on the symptom checklist: 1.) If a symptom is not documented in the medical record (e.g., clinician does not note if a symptom is present or not present), select unknown. 2.) Select “no” if it is specifically noted by the clinician as not present in the medical record (e.g., afebrile documented in note).
When completing the URTI vs LRTI question, do I select URTI if the clinician's note does not specify either?
Please answer the question based on what is written in the patients medical record. If nothing is documented please select unknown. If both URTI and LRTI are documented, check both. Our team is also reviewing cases submitted for LRTI classification (e.g., symptoms, imaging findings, oxygen support).