Table 2.
Protocol for Increasing Accrual Using Social Media conversion rates by protocol (N=1465 for all protocols combined).
| Protocol, consortium, and recruitment type | Website users | Users who consented | ||||||||
|
|
n (%) | N | n (%) | N | ||||||
| Abatacept (CTLA4-Ig) for the Treatment of Relapsing, Non-Severe, Granulomatosis With Polyangiitis (ABROGATE) | ||||||||||
|
|
VCRCa 5527 | |||||||||
|
|
|
Organic Facebook | 18 (7.5) | 239 | 0 (0) | 18 | ||||
|
|
|
Paid Facebook advertising | 39 (16.3) | 239 | 0 (0) | 39 | ||||
|
|
|
Organic Twitter | 26 (10.9) | 239 | 0 (0) | 26 | ||||
|
|
|
Other web-based recruitment | 37 (15.5) | 239 | 0 (0) | 37 | ||||
|
|
|
RDCRNb patient contact registry | 117 (49.0) | 239 | 8 (6.8) | 117 | ||||
|
|
|
PAGc outreach | 2 (0.8) | 239 | 0 (0) | 2 | ||||
| A Randomized, Multicenter Study for Isolated Skin Vasculitis (ARAMIS) | ||||||||||
|
|
VCRC 5562 | |||||||||
|
|
|
Organic Facebook | 74 (57.3) | 129 | 0 (0) | 74 | ||||
|
|
|
Paid Facebook advertising | 10 (7.8) | 129 | 0 (0) | 10 | ||||
|
|
|
Organic Twitter | 29 (22.5) | 129 | 0 (0) | 29 | ||||
|
|
|
Other web-based recruitment | 4 (3.1) | 129 | 0 (0) | 4 | ||||
|
|
|
RDCRN patient contact registry | 12 (9.3) | 129 | 1 (8.3) | 12 | ||||
|
|
|
PAG outreach | 0 (0) | 129 | 0 (0) | 0 | ||||
| Longitudinal Evaluation of Autoimmune Pulmonary Alveolar Proteinosis (LongPAP) | ||||||||||
|
|
RLDd 5712 | |||||||||
|
|
|
Organic Facebook | 82 (38) | 216 | 0 (0) | 8 | ||||
|
|
|
Paid Facebook advertising | 10 (4.6) | 216 | 0 (0) | 10 | ||||
|
|
|
Organic Twitter | 29 (13.4) | 216 | 0 (0) | 29 | ||||
|
|
|
Other web-based recruitment | 3 (1.4) | 216 | 0 (0) | 3 | ||||
|
|
|
RDCRN patient contact registry | 92 (42.6) | 216 | 33 (35.9) | 92 | ||||
|
|
|
PAG outreach | 0 (0) | 216 | 0 (0) | 0 | ||||
| Newer Direct-Acting Anti-Viral Agents as Sole Therapy of Porphyria Cutanea Tarda in Subjects With Chronic Hepatitis C | ||||||||||
|
|
PCe 7210 | |||||||||
|
|
|
Organic Facebook | 49 (48.5) | 101 | 0 (0) | 49 | ||||
|
|
|
Paid Facebook advertising | 3 (3) | 101 | 0 (0) | 3 | ||||
|
|
|
Organic Twitter | 15 (14.9) | 101 | 0 (0) | 15 | ||||
|
|
|
Other web-based recruitment | 0 (0) | 101 | 0 (0) | 0 | ||||
|
|
|
RDCRN patient contact registry | 32 (31.6) | 101 | 7 (21.9) | 32 | ||||
|
|
|
PAG outreach | 2 (2) | 101 | 0 (0) | 2 | ||||
| A Randomized Double-Blind Controlled Trial of Everolimus in Individuals With PTEN Mutations | ||||||||||
|
|
DSCf 7904 | |||||||||
|
|
|
Organic Facebook | 31 (11.4) | 273 | 0 (0) | 31 | ||||
|
|
|
Paid Facebook advertising | 28 (10.2) | 273 | 1 (3.6) | 28 | ||||
|
|
|
Organic Twitter | 40 (14.7) | 273 | 3 (7.5) | 40 | ||||
|
|
|
Other web-based recruitment | 14 (5.1) | 273 | 0 (0) | 14 | ||||
|
|
|
RDCRN patient contact registry | 160 (58.6) | 273 | 16 (10) | 160 | ||||
|
|
|
PAG outreach | 0 (0) | 273 | 0 (0) | 0 | ||||
| A Prospective, Multicenter Study to Compare and Validate Endoscopic, Histologic, Molecular, and Patient-Reported Outcomes in Pediatric and Adult Patients With Eosinophilic Esophagitis, Gastritis, and Colitis | ||||||||||
|
|
CEGIRg 7801 | |||||||||
|
|
|
Organic Facebook | 422 (83.2) | 507 | 46 (10.9) | 422 | ||||
|
|
|
Paid Facebook advertising | 7 (1.4) | 507 | 0 (0) | 7 | ||||
|
|
|
Organic Twitter | 21 (4.1) | 507 | 1 (4.8) | 21 | ||||
|
|
|
Other web-based recruitment | 9 (1.8) | 507 | 1 (11.1) | 9 | ||||
|
|
|
RDCRN patient contact registry | 48 (9.5) | 507 | 19 (39.6) | 48 | ||||
|
|
|
PAG outreach | 0 (0) | 507 | 0 (0) | 0 | ||||
aVCRC: Vasculitis Clinical Research Consortium.
bRDCRN: Rare Diseases Clinical Research Network.
cPAG: patient advocacy group.
dRLD: Rare Lung Disease Consortium.
ePC: Porphyrias Consortium.
fDSC: Developmental Synaptopathies Consortium.
gCEGIR: Consortium of Eosinophilic Gastrointestinal Disease Researchers.