Table 2.
Registries reporting majority paediatric patients (>50%).
| Registry | Scope: Hospital/Regional/National/International (Nation) |
Years Active | Publications (Type of Study) |
Diagnostic Inclusion | Number of Patients in Publication (% of Registry) | Patient Age Range (Years) in Publication (Mean and SD or Median) |
PROMs Used | Frequency of PROM Collection | Risk of Bias (0–9) |
|---|---|---|---|---|---|---|---|---|---|
| Arthroplasty Registries | |||||||||
| Hospital Total Joint Registry | Hospital (USA) | Not stated (PD: 1998–2016) | Pallante et al. [28] (OC) | Total hip arthroplasty | 78 | 11–20 (Mean: 17) |
mHHS✗ | Once | 8 |
| Knee Ligament Registries | |||||||||
| Hospital ACL Database | Hospital (USA) | (PD: 2007–2009) | Boykin et al. [29] (OC) | ACL rupture | 135 | 13–17 (Median: 15) | PediIKDC✓ CHQ✓ |
Once | 8 |
| Hip Preservation Registries | |||||||||
| Hospital Hip Preservation Registry | Hospital (USA) | Not stated (PD: 2010–2014) | Nwachukwu et al. [30] (OC) |
Arthroscopic treatment of FAI | 47 | (Mean: 16.5) | iHOT-33✗ mHHS✗ HOS✓ |
Before surgery, after surgery: 12 months | 8 |
| Hospital FAI Registry | Hospital (USA) |
Not stated | Serbin et al. [31] (CC) | Surgical treatment of FAI | 81 | 10–20 | mHHS✗ HOOS✗ |
Before surgery, after surgery: 12, 24 months | 7 |
| Spine Registries | |||||||||
| Multi-Center Scoliosis Registry (Harms Study Group) |
Regional (USA) | 1995–present (PD: 1997–2016) |
Bastrom et al. [32] (CC) | AIS | 1193 | (Mean: 15, SD: 2) | SRS-7✓ SRS-24✓ SRS-22✓ SRS-22r✓ |
Before surgery, after surgery: 12, 24, 60, 120 months |
8 |
| Bastrom et al. [33] (OC) | Posterior spinal fusion | 1695 | (Mean: 14.7, SD: 2) | 8 | |||||
| Bastrom et al. [17] (OC) | Surgical correction of AIS | 829 | Not stated | 6 | |||||
| Bastrom et al. [34] (OC) | AIS with an operative COBB range | 584 | 10–21 (Mean: 14.7, SD: 2) | 7 | |||||
| Benes et al. [35] (OC) Bennett et al. [36] (OC) |
Posterior spinal fusion and infection AIS |
47 99 |
(Mean: 15, SD: 2) (Mean: 14, SD: 2.1) |
7 7 |
|||||
| Bennett et al. [37] (CC) | AIS | 1020 | (Mean: 14, SD: 2.1) | 7 | |||||
| Buckland et al. [38] (OC) | Surgical correction of AIS | 2210 | (Mean: 14.7, SD: 2.1) | 8 8 |
|||||
| Hughes et al. [39] (CC) | AIS | 916 | (Mean: 14.3, SD: 2.1) | 7 | |||||
| Jain et al. [40] (OC) | AIS | 685 | (Mean: 14.7, SD: 2.2) | 7 | |||||
| Kelly et al. [41] (OC) | Surgical correction of AIS | 1281 (44%) |
10–22 (Mean: 14.6) |
7 | |||||
| Lark et al. [42] (CC) | AIS | 150 | (Mean: 15, SD: 2) | 8 | |||||
| Lonner et al. [43] (OC) | AIS | 1031 | 10–21 | 7 | |||||
| Louer et al. [44] (OC) | AIS | 51 | (Mean: 14/15) | 7 | |||||
| Newton et al. [45] (OC) Newton et al. [46] (CC) |
Major thoracic scoliosis Thoracic scoliosis |
174 474 |
10–21 (Mean: 14.5, SD: 2.1 at surgery, mean: 25, SD: 2.3 at follow-up) 8–18 |
7 8 |
|||||
| Ohashi et al. [47] (CC) |
Major thoracic AIS | 405 | 10–21 (Mean: 14.4, SD: 2.1) |
8 | |||||
| Phillips et al. [48] (OC) |
AIS with primary structural thoracolumbar curves | 139 | (Mean: 15.2, SD: 2) | 8 | |||||
| Schulz et al. [49] (OC) | AIS | 106 | (Mean: 14.5, SD: 2) | 7 | |||||
| Segal et al. [50] (CC) | AIS | 225 | (Mean: 14.5) | 7 | |||||
| Singla et al. [51] (CC) Stone et al. [52] (OC) |
AIS AIS |
74 3686 |
(Mean: 14.2) (Mean: 14.5, SD: 2.2) |
7 7 |
|||||
| Upasani et al. [53] (OC) | AIS | 49 | (Mean: 14.2) | 7 | |||||
| Multi-Center CP Spine Registry | Regional (USA) | Not stated (PD: 2008–2015) |
Badin et al. [54] (CC) Eguia et al. [55] (OC) |
Posterior spinal fusion (with CP) Posterior spinal fusion (with CP) |
222 | (Mean: 14, SD: 3) (Mean: 14, SD: 2.7) |
CPCHILD✓ | Before surgery, after surgery: 12, 24, 60 months | 7 7 |
| Jain et al. [56] (OC) | CP | 212 | 8–20 (Mean:14, SD: 2.6) | 7 | |||||
| Miller et al. [57] (OC) |
Posterior spinal fusion (with non-ambulatory CP) | 157 | Not stated: <21 | 8 | |||||
| Miyanji et al. [58] (OC) | CP and scoliosis | 203 | (Mean: 13.5, SD: 2.64) | 7 | |||||
| Vivas et al. [59] (OC) |
Posterior spinal fusion (with CP) | 218 | (Mean: 14.2) | 8 | |||||
| Paediatric Spine Study Group (Previously: Growing Spine Study Group and Children’s Spine Study Group) | International | Not stated (PD: 1997–2018) |
Bauer et al. [60] (CC) | EOS | 302 | Not stated | EOSQ-24✓ | Before surgery, after surgery: 24 months, end of treatment | 7 |
| Campbell et al. [61] (CC) Gomez et al. [62] (OC) |
EOS Congenital scoliosis |
503 53 |
(Mean: 5.6, SD: 3.7) 1–11 |
7 7 |
|||||
| Heffernan et al. [63] (CC) | EOS | 960 | (Mean: 5.8/6.1) | 8 | |||||
| Helenius et al. [64] (CC) | Skeletal dysplasias | 33 (6%) | 1–10 (Mean: 5.3/5.4) |
9 | |||||
| Helenius et al. [65] (CC) Henstenburg et al. [66] (OC) |
Severe and moderate EOS EOS |
80 (14%) 66 |
1–9 (Mean: 5.4/5.3) 0–6 |
9 8 |
|||||
| Matsumoto et al. [67] (CC) | EOS | 155 | (Mean: 12.5, SD: 2.1) | 8 | |||||
| Matsumoto et al. [68] (CC) | EOS | 91 | (Mean: 2.1, SD: 1.2) | 7 | |||||
| Matsumoto et al. [69] (OC) | EOS | 121 | 4–17 (Mean: 10.4, SD: 0.2) | 9 | |||||
| Matsumoto et al. [70] (CC) | SMA and EOS | 74 | 2–12 (Mean: 7.6, SD: 2.3) | 8 | |||||
| Nossov et al. [71] (CC) | EOS | 329 | 0–10 | 8 | |||||
| Ramirez et al. [72] (OC) | EOS | 30 | 2.7–9 (Mean: 5.3, SD: 2.6) | 7 | |||||
| Ramo et al. [73] (OC) | EOS | 610 | 0–17(Mean: 6.1, SD: 3.8) | 7 | |||||
| Roye et al. [74] (OC) | EOS | 443 | 12–23 (Mean: 14.9 SD: 1.8) | 8 | |||||
| Roye et al. [75] (CC) | EOS | 325 | (Mean: 6.4, SD: 2.5) | 7 | |||||
| Saarinen et al. [76] (CC) Shaw et al. [77] (OC) |
EOS EOS treated with distraction instrumentation |
88 150 |
(Mean: 7.4/7) (Mean: 7, SD: 2.6) |
7 8 |
|||||
| Verhofste et al. [78] (CC) | AMC and EOS | 57 | (Mean: 6.2/6.4) | 7 | |||||
| Spinal Deformity Study Group Registry | Regional (USA) | Not stated (PD: 2003–2007) | Carreon et al. [79] (OC) | Idiopathic scoliosis | 887 | 10–18 | SRS-22✗ SRS-30✗ SAQ✓ |
Before surgery, after surgery: 12, 24, 60 months | 7 |
| Crawford et al. [80] (CC) | 264 | (Mean: 14.7/14.8) | 7 | ||||||
| Fletcher et al. [81] (CC) | 214 | (Mean: 14.5, SD: 1.8) | 8 | ||||||
| Landman et al. [82] (OC) | 1433 | Not reported | 7 | ||||||
| Luhmann et al. [83] (CC) | 101 | (Mean: 15.8/16/15.9) | 8 | ||||||
| Sieberg et al. [84] (OC) |
260 | 8–21 (Mean: 14.35, SD: 2.23) | 8 | ||||||
| Roberts et al. [85] (CC) | 744 | (Mean: 14/15.2) | 7 | ||||||
| Sanders et al. [86] (CC) | 477 | (Mean: 13.97) | 7 | ||||||
| Theologis et al. [87] (CC) | 461 | 10–18 | 7 | ||||||
| Zebracki et al. [88] (OC) | 45 | (Mean: 16.5/15.1) | 7 | ||||||
| International Spine Registry | International | Not stated | Djurasovic et al. [89] (CC) | Idiopathic scoliosis | 1510 | (Mean: 14.53/15.12) | SRS22r✓ | Before surgery, after surgery | 7 |
| Regional West Africa Spine Database | Regional (Ghana) | Not stated (PD: 2012–2013) | Nemani et al. [90] (OC) | AIS and traction | 29 | (Mean: 14, SD: 5) | SRS-22✓ | Before surgery, after surgery: 1.5 months | 7 |
| Hospital Spine Registry | Hospital (Italy) | Not stated (PD: 2003–2009) | Negrini et al. [91] (CC) | Idiopathic scoliosis, COBB angle >45°, and refusal of surgical intervention | 28 (0.4%) | (Mean: 14, SD: 1.8) | SRS-22✓ | Once (end of treatment) | 8 |
| Multi-Centre Spine Registry | Regional (Canada) | Not stated (PD: 2009–2012) | Miyanji et al. [92] (CC) | Minimally invasive surgery for AIS | 46 | 14–20 (Mean: 16.8) | SRS-22r✓ | Before surgery, after surgery: 24 months | 8 |
| Hospital Spondylo-listhesis Registry | Hospital (Canada) | (PD: 2002–2009) | Bourassa-Moreau et al. [93] (CC) | Spondylolisthesis | 34 | 7–20 | SRS-22r✗ SF12✗ |
Before surgery, after surgery | 7 |
| Hospital AIS Registry | Hospital (USA) | (PD: 2016–2017) | Diebo et al. [94] (OC) | AIS | 47 | 10–25 (Mean: 15, SD:3) | Srs30✓ BIDQ✓ |
7 | |
| Hospital Surgical Spine Database | Hospital (USA) |
(PD: 2002–2012) | Godzik et al. [95] (CC) | Chiara malformation and AIS | 41 | (Mean: 14, SD:6) | SRS-22✓, -24✓, -29✓, -30✓ |
Before surgery, after surgery: 24 months | 7 |
| Hospital Spine Registry | Hospital (The Netherlands) |
2014–present | Mens et al. [96] (OC) | AIS | 144 | (Mean: 15, IQR: 14–17) | SRS22r✓ EQ5D3L✗ ODI✗ NRS✓ |
Before surgery, after surgery: 24 months | 7 |
| Hospital Spine Registry | Hospital (China) | (PD: 2012–2014) | Zhu et al. [97] (CC) | AIS | 45 | (Mean: 16.5/15.1) | SRS22✓ | Once | 7 |
| Hospital Congenital Scoliosis Database | Hospital (USA) | 2006–present (PD: 2016–2017) |
Li et al. [98] (OC) |
Congenital scoliosis | 98 | 0–18 | EOSQ-24✓ SRS-22✓ |
Once | 7 |
| Hospital AIS Surgery Database | Hospital (USA) | (PD: 2016–2019) | Thomas et al. [99] (OC) | AIS | 48 | (Mean: 14.9, SD: 1.9) | SRS22✓ | Before surgery, after surgery: 6, 24 months | 7 |
| Rare Disease Registries | |||||||||
| Australian Rett Syndrome Database | National (Australia) | 1993–present (PD: 2000–2006) |
Downs et al. [100] (OC) | Scoliosis | 102 (33%) | 4–24 (Mean: 13.1/15.2) | Modified parent-report WeeFIM✓ RS: SSI✓ RSBQ✓ |
Every 2 years | 7 |
| German Austrian DMD Registry | International (Germany and Austria) | Not stated (PD: 2017–2018) | Schorling et al. [101] (OC) | DMD | 351 (24%) | 60% < 16 | Custom questionnaire✗ | Once | 8 |
| Cure SMA Registry | International | 1996–present, (PD: 2017–2018) | Belter et al. [21] (OC) |
SMA | 2017: 695 (10%) 2018: 796 (11%) |
0–78 (Median: 11) | Custom questionnaire✗ | Twice | 6 |
| Morquio Registry | International | (PD: 1998–2006) | Montano et al. [102] (OC) | MPS Morquio | 326 | 1–73 (65% < 18) | Custom questionnaire✗ | Once | 8 |
| Pain Registries | |||||||||
| Hospital Analgesia Registry | Hospital (USA) | Not stated (PD: 2003–2006) | Ganesh et al. [103] (OC) | Continuous CPNB for post-op analgesia following orthopaedic surgery | 217 | 4–18 (Mean: 13.7, SD: 3.4) | vNRS✗ | Ongoing during admission | 7 |
| Multi-Center Medical Record Pain Database | Regional (USA) | Not stated (PD: 2012–2019) | Zhang et al. [104] (CC) | Posterior spinal fusion for AIS | 682 | (Mean: 14) | NRS✓ VAS✓ |
Variable between sites | 7 |
| Other registries | |||||||||
| Motion Analysis Laboratory Database | Hospital (USA) | Not stated (PD: 1994–2013 | McMulkin et al. [105] (CC) | Cerebral palsy and femoral derotation osteotomy | 133 | 4–20 | PODCI✓ | Before surgery, after surgery | 8 |
| Schwartz et al. [106] (OC) | Cerebral palsy | 135 | 3–44 | GFAQ✓ | 8 | ||||
| Other Knee Registries | |||||||||
| Hospital Osteochondral Allograft Registry | Hospital (USA) | Not stated (PD: 2004–2017) | Gilat et al. [107] (CC) | Osteochondral allograft transplant of the knee | 46 | (Mean: 16.8, SD: 1.3) | IKDC✗ Lysholm✗ KOOS✗ WOMAC✗ SF12✓ |
Before surgery, after surgery | 7 |
Key: ✓ = PROM validated for age range in study, ✗ = age range of study is outside validated range of PROM, ACL: anterior cruciate ligament, AIS: adolescent idiopathic scoliosis, BIDQ: Body Image Disturbance Questionnaire, CC: case control study, CHQ: Child Health QuestionnaireTM, CP: cerebral palsy, CPCHILD: Caregiver Priorities and Child Health Index of Life with Disabilities, CPNB: continuous peripheral nerve blockade, DMD: Duchenne muscular dystrophy, EOS: early-onset scoliosis, EOSQ-24: Early-Onset Scoliosis Questionnaire, FAI: femoro-acetabular impingement, GFAQ: Gillette Functional Assessment Questionnaire, HOS: Hip Outcome Score, iHOT-33: International Hip Outcome Tool, IKDC: International Knee Documentation Committee, KOOS: Knee Injury and Osteoarthritis Outcome Score, mHHS: Modified Harris Hip Score, MPS: mucopolysaccharidosis, OC: observational cohort study, PD: published data, PediIKDC: Pediatric Version International Knee Documentation Committee, PODCI: Pediatric Outcomes Data Collection Instrument, RSBQ: Rett Syndrome Behaviour Questionnaire, RS: SSI: Rett Syndrome: Symptom Severity Index, SAQ: Scoliosis Appearance Questionnaire, SF12: Short Form-12, SMA: spinal muscular atrophy, SRS: Scoliosis Research Society, USA: United States of America, VAS: Visual Analogue Scale, vNRS: Verbal Numerical Rating Scale, WeeFIM: Functional Independence Measure (Child version), WOMAC: Western Ontario and McMaster Universities Osteoarthritis Index.