Determinants of gait dystonia severity in cerebral palsy.

AIM: To determine the movement features governing expert assessment of gait dystonia severity in individuals with cerebral palsy (CP). METHOD: In this prospective cohort study, three movement disorder neurologists graded lower extremity dystonia severity in gait videos of individuals with CP using a 10-point Likert-like scale. Using conventional content analysis, we determined the features experts cited when grading dystonia severity. Then, using open-source pose estimation techniques, we determined gait variable analogs of these expert-cited features correlating with their assessments of dystonia severity. RESULTS: Experts assessed videos from 116 participants (46 with dystonia aged 15 years [SD 3] and 70 without dystonia aged 15 years [SD 2], both groups ranging 10-20 years old and 50% male). Variable limb adduction was most commonly cited by experts when identifying dystonia, comprising 60% of expert statements. Effect on gait (regularity, stability, trajectory, speed) and dystonia amplitude were common features experts used to determine dystonia severity, comprising 19% and 13% of statements respectively. Gait variables assessing adduction variability and amplitude (inter-ankle distance variance and foot adduction amplitude) were significantly correlated with expert assessment of dystonia severity (multiple linear regression, p < 0.001). INTERPRETATION: Adduction variability and amplitude are quantifiable gait features that correlate with expert-determined gait dystonia severity in individuals with CP. Consideration of these features could help optimize and standardize the clinical assessment of gait dystonia severity in individuals with CP.

Prevalence and risk factors associated with HIV and syphilis co-infection in the African Cohort Study: a cross-sectional study.

BACKGROUND: Each year, 5.6 million new syphilis cases are diagnosed globally. Guidelines for people living with HIV (PLWH) in low-income countries (LIC) recommend STI testing for symptomatic persons and those newly diagnosed with HIV; routine STI testing is less clear. Here we provide updated syphilis prevalence and identify co-infection risk factors in PLWH in the African Cohort Study (AFRICOS) to understand these rates as they relate to syndromic treatment. METHODS: AFRICOS is a study enrolling PLWH and HIV-uninfected individuals in four African countries. Participant study enrollment information was used to determine syphilis prevalence and co-infection risk factors. Inclusion criteria consisted of adults 18 years or older receiving care at a participating clinic as a long-term resident who consented to data and specimen collection. Exclusion criteria consisted of pregnancy and/or imprisonment. Screen-positive syphilis was defined as a reactive rapid plasma regain (RPR) upon study enrollment whereas confirmed syphilis included a reactive RPR followed by reactive treponemal test. Multivariate analyses was performed to determine HIV and syphilis co-infection risk factors. RESULTS: Between 2013 and March 1, 2020, 2939 PLWH enrolled and 2818 were included for analysis. Screen-positive and confirmed syphilis prevalence were 5.3% (151/2818) and 3.1% (87/2818), respectively. When the analysis was restricted to PLWH with an RPR titer of greater than, or equal to, 1:8, 11/87 (12.6%) participants were included. No PLWH and confirmed syphilis had documented genital ulcers. In the multivariate model, participants with confirmed syphilis co-infection were more likely to have none or some primary education [aOR 3.29 (1.60, 6.74)] and consume alcohol [aOR 1.87 (1.16, 3.03)] compared to those without syphilis. Antiretroviral therapy (ART) with suppressed viral load (VL) was protective in the unadjusted model but not adjusted multivariate model. CONCLUSIONS: Our findings show that syphilis rates in sub-Saharan Africa remain elevated where diagnosis remains challenging, and that both lower education level and alcohol consumption are significantly associated with HIV/syphilis co-infection in AFRICOS. Based on our analysis, current STI guidelines targeting testing for African individuals with either new HIV diagnosis or syndromic symptoms may be inadequate, highlighting the need for increased testing and treatment strategies in resource-limited settings.

Gait features of dystonia in cerebral palsy.

AIM: To determine the features cited by motor phenotyping experts when identifying dystonia in people with cerebral palsy (CP). METHOD: Dystonia identification in CP, particularly when comorbid with spasticity, can be difficult. The dystonia diagnostic criterion standard remains subjective visual identification by expert consensus. For this qualitative study, we conducted an inductive thematic analysis of consensus-building discussions between three pediatric movement disorder physicians as they identified the presence or absence of dystonia in gait videos of 40 participants with spastic CP and periventricular leukomalacia. RESULTS: Unanimous consensus about the presence or absence of dystonia was achieved for 34 out of 40 videos. Two main themes were present during consensus-building discussions as videos were evaluated for dystonia: (1) unilateral leg or foot adduction that was variable over time, and (2) difficulty in identifying dystonia. Codes contributing to the first theme were more likely to be cited by a discussant when they felt dystonia was present (as opposed to absent) in a video (χ2 test, p=0.004). DISCUSSION: These results describe the gait features cited by experts during consensus-building discussion as they identify dystonia in ambulatory people with CP. Qualitative thematic analysis of these discussions could help codify the subjective process of dystonia diagnosis.

AADC deficiency from infancy to adulthood: Symptoms and developmental outcome in an international cohort of 63 patients.

Aromatic l-amino acid decarboxylase deficiency (AADCD) is a rare, autosomal recessive neurodevelopmental disorder characterized by impaired synthesis of dopamine, noradrenaline, adrenaline and serotonin, leading to a complex syndrome of motor, behavioral, and autonomic symptoms. This retrospective study assessed the symptoms and developmental outcome of a large international cohort of patients with AADCD via physician and/or caregiver responses to a detailed, standardized questionnaire. Sixty-three patients (60% female; ages 6 months-36 years, median 7 years; 58 living) from 23 individual countries participated. Common symptoms at onset (median age 3 months, range 0-12 months) were hypotonia, developmental delay, and/or oculogyric crises. Oculogyric crises were present in 97% of patients aged 2 to 12 years, occurred in the majority of patients in all age groups, and tended to be most severe during early childhood. Prominent non-motor symptoms were sleep disturbance, irritable mood, and feeding difficulties. The majority of subjects (70%) had profound motor impairment characterized by absent head control and minimal voluntary movement, while 17% had mild motor impairment and were able to walk independently. Dopamine agonists were the medications most likely to produce some symptomatic benefit, but were associated with dose-limiting side effects (dyskinesia, insomnia, irritability, vomiting) that led to discontinuation 25% of the time. The age distribution of our cohort (70% of subjects under age 13 years) and the observation of a greater proportion of patients with a more severe disease phenotype in the younger compared to the older patients, both suggest a significant mortality risk during childhood for patients with severe disease.

Herpes Zoster Rates Continue to Decline in People Living With Human Immunodeficiency Virus but Remain Higher Than Rates Reported in the General US Population.

In the antiretroviral therapy era, herpes zoster incidence continued to decline in people living with HIV (PLWH). However, at 0.9 cases/100 person-years, rates in PLWH are substantially higher than the general US population; emphasizing the needs for studies of the subunit vaccine in PLWH.

Instrumental and sensory methodologies to characterize the residual film of topical products applied to skin.

BACKGROUND: The work is aimed at the development of a methodology to characterize the tactile properties of topical products during application. Specific attention was paid to the study of the residual properties left at the surface of the skin. This approach was interestingly used to better understand the formulation factors governing the skinfeel of topical preparations. MATERIALS AND METHODS: Cosmetic and pharmaceutical topical products were selected based on their various texture, galenic form (gel or emulsion), and composition (polymer used as texturing agent). Key texture attributes namely Firmness, Stickiness, Spreadability, and Amount of residue were objectively evaluated using sensory analysis. Additionally, texture analysis (compression test), rheology (flow test), and tribology (in vivo friction test) were carried out. RESULTS: Sensory evaluations highlighted a great diversity of tactile properties among products when applied to skin. For example, assessors perceived an important amount of residue left by emulsions whereas gels were not leaving any residue after application to the skin. These results were confirmed by in vivo tactile friction measurements with two distinct evolutions in time of the residual film properties. CONCLUSION: The present investigation shows how the tactile properties of topical gels and emulsions are studied using complementary tests in order to understand and improve the skinfeel of topical preparations.

Human papillomavirus testing versus cytology in primary cervical cancer screening: End-of-study and extended follow-up results from the Canadian cervical cancer screening trial.

The Canadian Cervical Cancer Screening Trial was a randomized controlled trial comparing the performance of human papillomavirus (HPV) testing and Papanicolaou cytology to detect cervical intraepithelial neoplasia of grades 2 or worse (CIN2+) among women aged 30-69 years attending routine cervical cancer screening in Montreal and St. John's, Canada (n = 10,154). We examined screening and prognostic values of enrollment cytologic and HPV testing results. Extended follow-up data were available for St. John's participants (n = 5,754; 501,682.6 person-months). HPV testing detected more CIN2+ than cytology during protocol-defined (82.9 vs. 44.4%) and extended (54.2 vs. 19.3%) follow-up periods, respectively. Three-year risks ranged from 0.87% (95% CI: 0.37-2.05) for HPV-/Pap- women to 35.77% (95% CI: 25.88-48.04) for HPV+/Pap+ women. Genotype-specific risks ranged from 0.90% (95% CI: 0.40-2.01) to 43.84% (95% CI: 32.42-57.24) among HPV- and HPV16+ women, respectively, exceeding those associated with Pap+ or HPV+ results taken individually or jointly. Ten-year risks ranged from 1.15% (95% CI: 0.60-2.19) for HPV-/Pap- women to 26.05% (95% CI: 15.34-42.13) for HPV+/Pap+ women and genotype-specific risks ranged from 1.13% (95% CI: 0.59-2.14) to 32.78% (95% CI: 21.15-48.51) among women testing HPV- and HPV16+, respectively. Abnormal cytology stratified risks most meaningfully for HPV+ women. Primary HPV testing every 3 years provided a similar or greater level of reassurance against disease risks as currently recommended screening strategies. HPV-based cervical screening may allow for greater disease detection than cytology-based screening and permit safe extensions of screening intervals; genotype-specific testing could provide further improvement in the positive predictive value of such screening.

Effects of psychological stress on the emission of volatile organic compounds from the skin.

Thirty-five women were included in a clinical study to characterize the volatile organic compounds (VOCs) emitted by the skin during exposure to psychological stress. An original silicon-based polymeric phase was used for VOC sampling on the forehead before and after stress induction. Cognitive stress was induced using specialized software that included a chronometer for semantic and arithmetic tasks. Assessment of stress was monitored using a State-trait anxiety inventory questionnaire, analysis of participants' verbal expressions and clinical measurements. Identification and relative quantification of VOCs were performed by gas chromatography-mass spectrometry. Stress induction was validated by a significant increase in state-anxiety as indicated by the questionnaire, modifications in electrodermal activity measurements and the expression of stress verbatims. In parallel, a sebum production increase and a skin pH decrease were observed. A total of 198 VOCs with different potential sources were identified. They were categorized in 5 groups: probable cosmetic composition, VOCs produced by the body or its microbiota, environmental origin, and dietary intake. In our qualitative statistical approach, three VOCs were found to be correlated with stress induction and 14 compounds showed significance in the paired Wilcoxon test. Fatty-acyls derived from lipids were predominantly identified as well as ethylbenzenes.

Responsive Feeding Practices to Promote Healthy Diets: A Mixed Method Study among Low-Income Caregivers with Toddlers.

Responsive feeding (RF), the reciprocal feeding approach between caregiver and child that promotes child health, is understudied among low-income caregivers. This mixed methods study with low-income caregivers of 12-to-36-month-olds aimed to (1) assess variability in RF and associations with children's dietary intake, and (2) explore caregivers' perceptions of RF. Caregivers (n = 134) completed an online survey with RF questions (n = 25), grouped into environmental (meal environment, caregiver modeling, caregiver beliefs) and child (self-regulation, hunger/satiety cues, food for reward, food acceptance) influences scores. Children's recent food group consumption was loaded onto healthy and less healthy intake scores. In an adjusted multiple linear regression analysis, greater RF scores for environmental and child influences were associated with greater healthy intake scores (p's < 0.01). Greater scores for environmental influences were also associated with lower scores for unhealthy intake (p < 0.01). From focus groups with a separate sample of caregivers (n = 24), thematic analysis uncovered that two themes aligned (trust in child cues, positive strategies to encourage children to eat non-preferred foods) and two misaligned (lack of trust in child cues, use of force/bribery) with RF. Complementary integration of quantitative and qualitative findings can inform future interventions with low-income caregivers, encouraging trust in young children's hunger/satiety cues and positive strategies for food acceptance to improve diet quality.

Stability of cervical specimens in SurePath medium for human papillomavirus testing with the Roche cobas 4800 assay.

The stability of cervical specimens in SurePath preservative fluid for human papillomavirus (HPV) testing with Roche cobas 4800 was determined using a panel of 308 pooled specimens from a colposcopy referral population. The SurePath specimens appeared to be stable for up to 10 weeks at ambient temperature for HPV testing with cobas 4800.

Chromobacterium violaceum in a U.S. Marine: A Case Report.

Chromobacterium violaceum is associated with severe sepsis leading to cutaneous and visceral organ abscesses, with mortality rates up to 73%. Around 200 cases of C. violaceum infection have been reported globally. We report a case of a 27-year-old female U.S. Marine recruit who presented with fever, chills, myalgias, arthralgias, headache, and nodules on her extremities. Physical examination revealed multiple small skin abscesses on her extremities. Abdominal imaging with contrast revealed large liver abscesses requiring drainage. Both blood and wound cultures grew C. violaceum. The patient was successfully treated with meropenem and ciprofloxacin. At 3 months, symptoms had resolved, and labs and imaging were normal. Though rare, C. violaceum infection rates are increasing. Severe infection develops rapidly and invasive disease is not uncommon. Early detection and appropriate antibiotic treatment are key in preventing mortality.

Applying cosmetic oil with added aromatic compounds improves tactile sensitivity and skin properties.

Tactile sensitivity generally decreases with aging and is associated with impairments in skin properties. Products that hydrate the skin can combat touch deficits and aromatic compounds have been shown to improve skin mechanical properties. Thus, we tested a base cosmetic oil against a perfumed oil, applied to the skin of females aged 40-60 years, on tactile sensitivity and skin properties after repeated application. Tactile detection thresholds were assessed using calibrated monofilaments applied at the index finger, palm, forearm, and cheek. Spatial discrimination on the finger was assessed using pairs of plates with different inter-band spaces. These tests were performed before and after 1 month of base or perfumed oil use. We found that tactile detection thresholds and spatial discrimination improved only in perfumed oil group. A complementary immunohistological study using human skin was conducted to estimate the expression of olfactory receptor OR2A4 and elastic fiber length. Further, the expression of OR2A4 intensity and the length of elastic fibers increased significantly with oil application, where larger effects were seen with the perfumed oil. We conclude that the application of a perfumed oil may be of additional benefit and could repair, and even prevent, tactile decline with aging by ameliorating skin condition.

Community-based COVID-19 outbreak of the B.1.1.7 (Alpha) variant of concern in Newfoundland, February to March 2021.

Background: From March 2020 to January 2021, Newfoundland and Labrador experienced 408 coronavirus disease 2019 (COVID-19) cases (incidence 78 per 100,000). In February and March 2021, a community outbreak of the B.1.1.7 (Alpha) variant occurred in the Eastern Regional Health Authority. This article describes the epidemiology of this variant of concern outbreak, identifies settings that likely contributed to spread and informs recommendations for public health measures (PHMs). Methods: Provincial surveillance data were linked with case interview data and a school class roster. Descriptive epidemiological methods were used to characterize the outbreak. Secondary attack rates (SAR) were calculated for households and classrooms. Results: This outbreak involved 577 laboratory-confirmed and 38 probable cases. Whole genome sequencing determined cases were B.1.1.7. The median age was 31 years and the highest proportion of cases were in the 15 to 19-year age group (29%); 293 (51%) were female and 140 (24%) were asymptomatic upon identification. Early cases were linked to a high school, sports activities, a restaurant and social gatherings. As the outbreak progressed, cases were associated with household transmission, a daycare, healthcare settings and a workplace. The unadjusted SAR estimate among laboratory-confirmed cases was 24.4% for households and 19.3% for classroom exposures. When adjusted for other potential exposures, SAR estimates were 19.9% for households and 11.3% for classrooms. Conclusion: This outbreak demonstrated how B.1.1.7 spread rapidly through a community with previously low COVID-19 transmission and few preventative PHMs in place. Implementation and compliance with school and community-based PHMs is critical for preventing transmission during outbreaks.

Upper Extremity Dystonia Features in People With Spastic Cerebral Palsy.

Background and Objectives: Dystonia in cerebral palsy (CP) is debilitating and common, but underdiagnosed, especially when coexistent with spasticity. With dedicated research-based assessment, dystonia is found in most people with spastic CP but is only clinically diagnosed in the minority. To begin addressing the high rates of dystonia underdiagnosis in this population, we determined the key feature experts use to assess upper extremity dystonia in people with spastic CP. Methods: In this prospective cohort study, 3 pediatric movement disorder specialists assessed upper extremity dystonia in neurologic examination videos of people with spastic CP and isolated periventricular leukomalacia (PVL) on brain MRI (i.e., those with a brain injury pattern typical for spastic CP). Dystonia severity was rated using the 10-point Global Dystonia Severity Rating Scale, first by each expert independently and then again after consensus-building discussion. Conventional content analysis of these discussions revealed salient features ("codes") that experts used to assess upper extremity dystonia. Code frequency distributions were compared between dystonia severity categories using χ2 tests. Results: We identified 96 people with spastic CP with isolated PVL on brain MRI seen in the St. Louis Children's Hospital CP Center between 2005 and 2018. Of them, 26 people were able and willing to be recorded while doing a standardized set of upper extremity examination maneuvers (age 4-25 years; 28% nonambulatory, 77% White). When assessing their videos, experts cited the "hand" less often and "shoulder" more often with increasing dystonia severity (p < 0.005, χ2 test). "Mirror movements" and the "hand open/close" examination maneuver were cited significantly more frequently in videos when experts were attempting to distinguish between no dystonia and mild dystonia (p < 0.005). Discussion: Expert clinicians use distinct movement features to assess upper extremity dystonia in people with spastic CP and PVL. Attention to involuntary shoulder (vs hand) movements can help gauge dystonia severity. Differentiation between mirror movements and dystonia, particularly during the hand open/close examination maneuver, may help identify mild dystonia. These results can help guide upper extremity dystonia assessment in people with spastic CP, thus potentially helping mitigate dystonia underdiagnosis.

HPV genotype-specific distribution and attributable risk in cervical intraepithelial neoplasia in a referral population with a history of LSIL.

BACKGROUND AND OBJECTIVE: CINtec PLUS and cobas HPV tests (Roche) were previously ascertained for triaging an LSIL referral population [1]. As part of this study, genotype-specific distribution and attributable risk of high-risk (HR)-HPV in cervical intraepithelial neoplasia (CIN) were determined. METHODS: Archived cervical specimens in ThinPrep PreservCyt (Hologic Inc) from the LSIL referral population (n= 533) were genotyped using the Anyplex II HPV HR test (Anyplex, Seegene Inc). Since the study specimens had been in storage in ambient temperature for 31-47 months since collection, Anyplex results were compared with that of the initial cobas testing of fresh specimens to validate the suitability and stability of specimens for the present study. RESULTS: Overall, Anyplex test was positive in 63% (336/533) vs. 55.7% (297/533) for cobas test. Anyplex test performed identical to cobas test identifying 93.2% (82/88) of ⩾CIN2/adenocarcinoma in situ (AIS). Anyplex test detected genotypes 16/18 in 15.7% (36/230) ⩽CIN1 vs. 45.5% (40/88) ⩾CIN2/AIS; the corresponding figures were 13.5% (31/230) and 45.5% (40/48) for the cobas test. Genotype 16 showed increasing attribution, 13.2% in CIN1, 27.1% in CIN2 and 40% in CIN3/AIS. Of the 12 other high-risk (OHR) types collectively identified by cobas, Anyplex test specifically detected, in decreasing order, genotypes 51, 31, 35, 56, 39, and 45 as the most frequent types, often in multiple-type infections, in 64.8% ⩾CIN2. Regardless, estimated attribution was evident for each of the 12 OHR types in ⩾CIN2. Multiple-type infections were more frequent than single-type infections in all CIN grades. CONCLUSIONS: Attributable risk of all HR-HPV genotypes targeted by both Anyplex and cobas tests was evident in ⩾CIN2/AIS Testing for these genotypes in HPV primary cervical screening and cytology triage could identify those at increased risk of cervical cancer and also be beneficial in the management of LSIL referral populations.

Doxycycline for the prevention of progression of COVID-19 to severe disease requiring intensive care unit (ICU) admission: A randomized, controlled, open-label, parallel group trial (DOXPREVENT.ICU).

BACKGROUND: After admission to hospital, COVID-19 progresses in a substantial proportion of patients to critical disease that requires intensive care unit (ICU) admission. METHODS: In a pragmatic, non-blinded trial, 387 patients aged 40-90 years were randomised to receive treatment with SoC plus doxycycline (n = 192) or SoC only (n = 195). The primary outcome was the need for ICU admission as judged by the attending physicians. Three types of analyses were carried out for the primary outcome: "Intention to treat" (ITT) based on randomisation; "Per protocol" (PP), excluding patients not treated according to randomisation; and "As treated" (AT), based on actual treatment received. The trial was undertaken in six hospitals in India with high-quality ICU facilities. An online application serving as the electronic case report form was developed to enable screening, randomisation and collection of outcomes data. RESULTS: Adherence to treatment per protocol was 95.1%. Among all 387 participants, 77 (19.9%) developed critical disease needing ICU admission. In all three primary outcome analyses, doxycycline was associated with a relative risk reduction (RRR) and absolute risk reduction (ARR): ITT 31.6% RRR, 7.4% ARR (P = 0.063); PP 40.7% RRR, 9.6% ARR (P = 0.017); AT 43.2% RRR, 10.8% ARR (P = 0.007), with numbers needed to treat (NTT) of 13.4 (ITT), 10.4 (PP), and 9.3 (AT), respectively. Doxycycline was well tolerated with not a single patient stopping treatment due to adverse events. CONCLUSIONS: In hospitalized COVID-19 patients, doxycycline, a safe, inexpensive, and widely available antibiotic with anti-inflammatory properties, reduces the need for ICU admission when added to SoC.

Modified reporting of positive urine cultures to reduce treatment of asymptomatic bacteriuria in long-term care facilities: a randomized controlled trial.

Objectives: We conducted a prospective, randomized, unblinded superiority trial of the safety and efficacy of modified reporting of positive urine cultures to improve the appropriateness of treatment for asymptomatic bacteriuria (ASB) and urinary tract infection (UTI) in long-term care facilities (LTCFs). Methods: Consecutive positive urine cultures collected from LTCF patients were randomized between standard (identification and susceptibility) or modified (without identification and susceptibility) laboratory reports. Exclusion criteria were current antibiotic treatment, neutropenia, or transfer to acute care. The diagnosis of UTI or ASB was made prospectively. Results: One hundred and sixty-nine urine cultures were considered, 100 were randomized and included in ITT analysis, and 96 were included in PP analysis. Sixty-two out of 100 (62%) patients had ASB [41/62 (66%) treated] and 38/100 (38%) had UTI [35/38 (92%) treated]. The lab was called to report the identification and susceptibility in 31/51 (61%) modified reports. The rate of appropriate treatment was higher in the modified report arm: 31/51 (61%) versus 25/49 (51%) (+10%, P = 0.33). Untreated ASB was higher in the modified report arm: 13/32 (41%) versus 8/30 (27%) (+14%, P = 0.25). There were two deaths (one treated ASB, one untreated ASB) and 15 adverse events in the modified arm. There were no deaths (P = 0.16) and 11 adverse events (P = 0.43) in the standard arm. Three patients with untreated UTI survived. Conclusions: Modified reporting of urine culture improved the appropriateness of treatment by reducing treatment of ASB, but not significantly. Many LTCF prescribers requested standard urine culture reports. Modified reporting may not be suitable for LTCF implementation.

Top 10 Research Themes for Dystonia in Cerebral Palsy: A Community-Driven Research Agenda.

Dystonia in cerebral palsy (DCP) is a common, debilitating, but understudied condition. The CP community (people with CP and caregivers) is uniquely equipped to help determine the research questions that best address their needs. We developed a community-driven DCP research agenda using the well-established James Lind Alliance methodology. CP community members, researchers, and clinicians were recruited through multiple advocacy, research, and professional organizations. To ensure shared baseline knowledge, participants watched webinars outlining our current knowledge on DCP prepared by a Steering Group of field experts (cprn.org/research-cp-dystonia-edition). Participants next submitted their remaining uncertainties about DCP. These were vetted by the Steering Group and consolidated to eliminate redundancy to generate a list of unique uncertainties, which were then prioritized by the participants. The top-prioritized uncertainties were aggregated into themes through iterative consensus-building discussions within the Steering Group. 166 webinar viewers generated 67 unique uncertainties. 29 uncertainties (17 generated by community members) were prioritized higher than their randomly matched pairs. These were coalesced into the following top 10 DCP research themes: (1) develop new treatments; (2) assess rehabilitation, psychological, and environmental management approaches; (3) compare effectiveness of current treatments; (4) improve diagnosis and severity assessments; (5) assess the effect of mixed tone (spasticity and dystonia) in outcomes and approaches; (6) assess predictors of treatment responsiveness; (7) identify pathophysiologic mechanisms; (8) characterize the natural history; (9) determine the best treatments for pain; and (10) increase family awareness. This community-driven research agenda reflects the concerns most important to the community, both in perception and in practice. We therefore encourage future DCP research to center around these themes. Furthermore, noting that community members (not clinicians or researchers) generated the majority of top-prioritized uncertainties, our results highlight the important contributions community members can make to research agendas, even beyond DCP.