Questions and answers from the Investigators' webinar, July 2017

Can you clarify what the definitive treatment plan is for Perthes’ please?

The case should be submitted in centres where the surgeon seeing the child has the intention to definitively treat the child – i.e. they are not planning on referring it elsewhere. We acknowledge that in some instance, children may be referred elsewhere later, though we are trying to ensure that we ask the questions of the primary decision makers from the outset.

If the patient has passed the 3 month follow-up period when we identify them do we miss this follow-up data?

The most important outcome to me is the 2-year outcome. If you have a child who is passed the initial, 3 month or 1-year time points then don’t worry. I am still most interested in the 2-year outcome – so please consent them.

Can I ask, at other sites are the surgeons entering data on REDcap or are the research nurses/data managers doing this?

Research Nurse 1 response: "I get the surgeon to complete the paper case report form and then add the data myself."
Research Nurse 2 response: "I enter whatever data I can and get a clinician to do the rest."

Different sites are dealing with this in different ways. Certainly some of the data is very technical, and only the surgeon will know the answers. In RedCap it is possible to print a PDF of the forms which may help the surgeons complete the information.

Can we consent even after surgery?

YES please. Consenting patients from the outset is best, though I ideally want patients to be included for their 2-year outcome – so consenting at anytime is good! Thank you.

Up to what date will you be collecting cases?

We are collecting new cases of SCFE or Perthes’ that present before the end of September 2017. We accept that some people may sometimes have a delay in uploading cases – so the database will be open unit the end of December.