SCID Family Survey for PIDTC Meeting at CHOP




Initials of the first and last name of person taking the survey, including their year of birth (example: HS1968)

Are you the patient, caregiver or sibling of patient?

If you have more than one child with SCID, please fill out one form per child.  Thank you.

What State or Providence did you live in during your first treatment?

What type of SCID does your child have (i.e. X-linked, ADA, Unknown, etc.)?

What month and year did your child receive his/her first treatment (BMT, GT, ADA) for SCID?

Was your child diagnosed through Newborn Screening? Yes
No

Did your child receive any of the following (check all that apply)? Bone marrow transplant
Gene therapy
Thymus transplant
Peg ADA

If your child had a BMT/GT, what type did they have (Sibling HLA Matched Donor, Haploidentical Family Match, Matched Unrelated Donor (MUD), Cord Blood, or Autologous (self/Gene Therapy)?

Did your child receive pre-conditioning before his/her first treatment (i.e. chemotherapy, ATG) and if so, what type (if you don't remember the name, just put "don't know")?

At what hospital did your child receive his/her first treatment (BMT, GT, Thymus transplant)?

At what age was the first treatment done?

Did your child survive treatment?

What therapy is your child currently on? IVIG
SCIG
Antibiotic Therapy
None

Were you ever told that your child's treatment (BMT/GT) has failed? Yes
No

Were you ever told or lead to believe that the first treatment your child received would last a lifetime (please explain your answer)?

Were you ever told that your child has been "cured" and if yes, by whom (Immunologist, Transplanter, Pediatrician etc.)?

Have you been told for how long your child will have to be followed by an Immunologist or the BMT team?

Were you ever told that your SCID child could pass the condition on to his or her children in the future? Yes, he/she could pass it on
No, he/she can't pass it on
This was never discussed
I'm not sure

Is the SCID patient currently enrolled in any of the following? Preschool/Daycare
School (grade K-12)
College (2 yr degree)
College (4 yr degree)
Currently not in school
Working full time
Working part time
Other (please explain)

From date of diagnosis until now, has your perception of how your child handled treatment become More positive
More negative
It went how I thought it would
No change, it went how I expected it to go

What is the current outcome status of the child with SCID? (check all that apply) Doing well
Warts
Sinusitis
Pulmonary issues
GvHD
Slow growth
Declining function
Other medical conditions
Awaiting another BMT or GT
Deceased
If you have other concerns please list
here:

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