stable_ild

Total Patients with Formal ASyS Antibody Diagnoses

There are substantial numbers of patients with unclear but suggestive diagnoses; for those, see Patients with Undefined Antibodies

Below are data from patients with formal antibody diagnoses. These data do not specify that patients have bleed dates or med starts – these are all patients in the database.

All ASyS Patients

antibody

n

percent

EJ

14

2.7%

JO1

231

44.3%

MDA5

98

18.8%

OJ

21

4.0%

PL12

66

12.7%

PL7

91

17.5%

Total

521

100.0%

All ASyS Patients with Bleed Data

These are results for ASyS patients with ANY follow-up bleeds.

There are no restraints to search parameters except they MUST have >=2 bleeds on record (these bleeds might be 10 days apart, or 10 years; as stated, no restraints have been added to these results).

N = 359 unique patients
N = 1314 total bleeds

n = 156 / 359 JO1 patients
n = 16 / 359 OJ patients
n = 64 / 359 MDA5 patients
n = 64 / 359 PL7 patients
n = 48 / 359 PL12 patients
n = 11 / 359 EJ patients

Selection, SOMA

The following is based on:

  • startdate is earliest blood sample on record
  • has at least 1 follow up bleed within specifications
  • farthest follow-up is 24 months (2 years)
  • interval between bleed dates is 12 months
  • buffer time between bleed dates (i.e., X months post-follow up \(\pm\) buffer) is 3 months

Looking at the distribution of follow-up days, we see the following distribution:

N = 136 unique patients
N = 314 total bleeds

n = 30 / 136 PL7 patients
n = 55 / 136 JO1 patients
n = 9 / 136 OJ patients
n = 24 / 136 MDA5 patients
n = 14 / 136 PL12 patients
n = 4 / 136 EJ patients

As an exploratory exercise, if we limit ourselves to patients:

  • who have bleed dates at days 0, 720
  • whose antibodies are NOT MDA5 or JO1
N = 13 unique patients
N = 26 total bleeds

n = 5 / 13 PL7 patients
n = 4 / 13 OJ patients
n = 4 / 13 PL12 patients

Next, if we then limit our gaze to patients meeting the following conditions:

-   antibody is MDA5 or JO1
-   antibody is PL12 with a titer >=50
-   all patients chart-verified to have same clinical diagnosis as our bleed results

We get:

N = 29 unique patients
N = 58 total bleeds

n = 20 / 29 JO1 patients
n = 9 / 29 MDA5 patients

followup_day

JO1

MDA5

Total

0

20 (69.0%)

9 (31.0%)

29 (100.0%)

360

20 (69.0%)

9 (31.0%)

29 (100.0%)

Total

40 (69.0%)

18 (31.0%)

58 (100.0%)

Adding Days 720

However, we would also like to include MDA5 and JO1 patients who had data from days 0, 360, AND 720.

So, adding those back in, we get the following new samples:

N = 7 unique patients
N = 7 total bleeds

n = 4 / 7 JO1 patients
n = 3 / 7 MDA5 patients

And thus, our total dataset would look like this:

N = 29 unique patients
N = 65 total bleeds

n = 20 / 29 JO1 patients
n = 9 / 29 MDA5 patients

Adding Extra PL12 / PL7 patients

To round out our result, we want to add in some PL12 and PL7 patients with appropriate day 0 and 360 results.

N = 39 unique patients
N = 85 total bleeds

n = 20 / 39 JO1 patients
n = 9 / 39 MDA5 patients
n = 5 / 39 PL7 patients
n = 5 / 39 PL12 patients

Adding Day 0, 720 results for OJ, PL7, PL12

If we add bleeds with:

  • day 0 and 720 results only, who
  • are anti-OJ, PL7, or PL12

We get:

N = 3 unique patients
N = 6 total bleeds

n = 1 / 3 OJ patients
n = 1 / 3 PL12 patients
n = 1 / 3 PL7 patients

This makes our total cumulative result:

N = 42 unique patients
N = 91 total bleeds

n = 20 / 42 JO1 patients
n = 9 / 42 MDA5 patients
n = 6 / 42 PL7 patients
n = 6 / 42 PL12 patients
n = 1 / 42 OJ patients

Summary of Hand-Added Results

Thus, we have added the following items to “round out” our initial results, which had been based on MDA5 and JO1 patients.

N = 20 unique patients
N = 33 total bleeds

n = 4 / 20 JO1 patients
n = 3 / 20 MDA5 patients
n = 6 / 20 PL7 patients
n = 6 / 20 PL12 patients
n = 1 / 20 OJ patients

Exporting the Result

For the total dataset, here are the results of bleeds we have on-hand at the NIH:

We already have n = 28 / 91 bleeds on hand.
Of that:
    - n = 9 / 28 are from SOMA testing
    - n = 19 / 28 are from other non-SOMA testing at the NIH

Thus, we need to request n = 63 / 91 samples

For the hand-added results, here are the results of bleeds we have on-hand at the NIH:

We already have n = 10 / 33 bleeds on hand.
Of that:
    - n = 3 / 10 are from SOMA testing
    - n = 7 / 10 are from other non-SOMA testing at the NIH

Thus, we need to request n = 23 / 33 samples

antibody

0

360

720

Total

JO1

8 (12.7%)

20 (31.7%)

4 (6.3%)

32 (50.8%)

MDA5

3 (4.8%)

9 (14.3%)

3 (4.8%)

15 (23.8%)

OJ

1 (1.6%)

0 (0.0%)

1 (1.6%)

2 (3.2%)

PL12

1 (1.6%)

5 (7.9%)

1 (1.6%)

7 (11.1%)

PL7

1 (1.6%)

5 (7.9%)

1 (1.6%)

7 (11.1%)

Total

14 (22.2%)

39 (61.9%)

10 (15.9%)

63 (100.0%)