SMC1A Community Needs: Target areas for SMC1A research.
Is the Patient diagnosed with the SMC1A mutation?
| Answer | Count | Percent |
|
Yes | 66 | 98.51% |
|
Other (please specify here) | 1 | 1.49% |
|
|---|---|---|---|---|---|---|---|---|
| Total | 67 | 100 % |
Is the Patient diagnosed with the SMC1A mutation? - Text Data for Other (please specify here)
| 03/07/2022 | 67554703 | SMC |
Has the Patient ever had Seizure(s)?
| Answer | Count | Percent |
|
Yes | 60 | 89.55% |
|
No | 5 | 7.46% |
|
Not Sure | 2 | 2.99% |
|
|---|---|---|---|---|---|---|---|---|
| Total | 67 | 100 % |
Has the Patient ever had Seizure(s)? - Text Data for Other (please specify here)
If yes, are the Seizures difficult to control?
| Answer | Count | Percent |
|
Yes | 57 | 85.07% |
|
Not Sure | 3 | 4.48% |
|
Doesn't Apply (no seizures) | 5 | 7.46% |
|
Other (please specify here) | 2 | 2.99% |
|
|---|---|---|---|---|---|---|---|---|
| Total | 67 | 100 % |
If yes, are the Seizures difficult to control? - Text Data for Other (please specify here)
| 05/11/2023 | 103416447 | Currently no seizures |
| 02/02/2022 | 65498951 | Amanda is seizure free for six weeks then she has cluster seizures about 1-5 in a seven day period. |
What is the Patient Gender?
| Answer | Count | Percent |
|
Female | 67 | 100% |
|
|
|---|---|---|---|---|---|---|---|---|
| Total | 67 | 100 % |
What is the Patient Gender? - Text Data for Other (please specify here)
Which Medical target areas are the most important for you to treat to improve your child’s quality of life? Select up to 3.
| Answer | Count | Percent |
|
Mobility and Motor Control | 43 | 26.38% |
|
Balance Issues | 25 | 15.34% |
|
GI Issues | 10 | 6.13% |
|
Hearing/Vision Problems | 5 | 3.07% |
|
Feeding Problems and G-tube | 9 | 5.52% |
|
Epilepsy and Seizures | 59 | 36.2% |
|
Frequent Infections | 4 | 2.45% |
|
Frequent Common Colds | 3 | 1.84% |
|
Other (please specify here) | 5 | 3.07% |
|
|---|---|---|---|---|---|---|---|---|
| Total | 163 | 100 % |
Which Medical target areas are the most important for you to treat to improve your child’s quality of life? Select up to 3. - Text Data for Other (please specify here)
| 03/14/2023 | 100221442 | slaap |
| 04/18/2022 | 71985182 | Retard acquisitions physiques et langage |
| 02/02/2022 | 65507032 | Independence with ADL's |
| 12/10/2021 | 61028720 | low muscle tone |
| 11/30/2021 | 60140984 | coordination |
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