Presentation of Young Adults With and Without Joint Hypermobility

NCT07657507 | Not Yet Recruiting

• 1 other identifier: IRB# 26-36
• Study Type: observational
• Target: 100
• Locations: 1 country
• Sites: 1

Brief Summary

People with multiple hypermobile joints are diagnosed with Generalized Joint Hypermobility (GJH) when asymptomatic, or Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorder (HSD) when symptomatic (hEDS/HSD, or 'HSD' here). GJH likely affects about 20% of the U.S. population, while HSD affects 0.5-3% of the US population. Although joint hypermobility is the most visible presentation of HSD, it is a systemic connective tissue disorder affecting multiple body systems. Due to frequent health concerns, HSD may contribute to more than 30% of patients in chronic pain, rheumatology, orthopedic and physical therapy clinics. It is still unclear why some people have asymptomatic hypermobility and others develop complex chronic health issues. However, recent research suggests that the transition might be triggered by severe physiological stress, such as viral infection. HSD is commonly associated with Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS), as well as gastrointestinal (GI) problems. Recent research suggests that persistent inflammation due to MCAS or COVID may trigger HSD symptoms. The correlation between POTS and HSD may be due to effects of HSD on the autonomic nervous system or to inflammation triggering both conditions. It is also unclear whether body awareness and coordination deficits seen in symptomatic HSD are due to the fundamental connective tissue disorder or due to pain and injuries in HSD. This study seeks to determine whether asymptomatic hypermobile individuals (GJH) also have balance and coordination deficits. The current study hopes to identify factors that correlate with a transition from asymptomatic GJH to symptomatic HSD by following a group of Health Science students forward in time. The study will collect baseline health information including relevant diagnoses, symptoms and function. Physical measurements will include standard clinical tests performed by physical therapists: joint hypermobility and instability, standing balance, neck movement control, and heart rate in response to standing from lying down. The study is likely to last for at least 10 years to follow participants over time.

Conditions

Hypermobile Ehlers-Danlos Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS)

Keywords

hypermobile Ehlers-Danlos Syndrome; Hypermobility Spectrum Disorders; Risk factors

Outcome Measures

Primary Outcomes (1)

• Hypermobility status

  Subject meets diagnostic criteria for generalized joint hypermobility, hypermobile Ehlers-Danlos Syndrome or Hypermobility Spectrum Disorders. This will be nominal: None, GJH, HSD hEDS.

  5 years

Secondary Outcomes (2)

• EuroQol, 5-Dimension, 5-Level (EQ-5D-5L)

  5 years

• Hypermobility Spider Questionnaire

  5 years

Other Outcomes (2)

• Physical activity

  5 years

• New comorbidities

  5 years

Study Arms (3)

hypermobile - symptomatic

People who meet the diagnostic criteria for hEDS or HSD

non-hypermobile

People who do not meet the diagnostic criteria for generalized joint laxity, hEDS or HSD

hypermobile - non-symptomatic

People with generalized joint laxity but not meeting diagnostic criteria for hEDS/HSD

Eligibility Criteria

• Age: 18 Years - 60 Years
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64)
• Sampling Method: Non-Probability Sample

Study Population

Health Science graduate students are typically 20-35 years old, though some non-traditional students might be slightly older.

Sponsors & Collaborators

• Clarkson University: lead

Study Sites (1)

Clarkson University, Lewis School of Health & Life Sciences

Potsdam, New York, 13699, United States

Location

Related Publications (15)

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  PMID: 34563706 BACKGROUND

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  PMID: 33980338 BACKGROUND

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  PMID: 28145611 BACKGROUND

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  PMID: 34808594 BACKGROUND

• Russek LN, Stott P, Simmonds J. Recognizing and Effectively Managing Hypermobility-Related Conditions. Phys Ther. 2019 Sep 1;99(9):1189-1200. doi: 10.1093/ptj/pzz078.

  PMID: 31158283 BACKGROUND

• Abed H, Ball PA, Wang LX. Diagnosis and management of postural orthostatic tachycardia syndrome: A brief review. J Geriatr Cardiol. 2012 Mar;9(1):61-7. doi: 10.3724/SP.J.1263.2012.00061.

  PMID: 22783324 BACKGROUND

• Puyol A, King M, Ganderton C, Hu S, Tirosh O. Balance Assessments Using Smartphone Sensor Systems and a Clinician-Led Modified BESS Test in Soccer Athletes with Hip-Related Pain: An Exploratory Cross-Sectional Study. Sensors (Basel). 2026 Feb 6;26(3):1061. doi: 10.3390/s26031061.

  PMID: 41682576 BACKGROUND

• Ormiston CK, Swiatkiewicz I, Taub PR. Postural orthostatic tachycardia syndrome as a sequela of COVID-19. Heart Rhythm. 2022 Nov;19(11):1880-1889. doi: 10.1016/j.hrthm.2022.07.014. Epub 2022 Jul 16.

  PMID: 35853576 BACKGROUND

• Griggs M, Daylor V, Petrucci T, Weintraub A, Huff M, Willey S, Byerly K, Loizzi B, Morningstar J, Ball LE, Bethard JR, Drake R, Sharma A, Eichinger JK, Nichols M, Kautz S, Shapiro S, Maitland A, Patel S, Norris RA, Gensemer C. Proteomic discoveries in hypermobile Ehlers-Danlos syndrome reveal insights into disease pathophysiology. Immunohorizons. 2025 Sep 17;9(10):vlaf044. doi: 10.1093/immhor/vlaf044.

  PMID: 40972649 BACKGROUND

• Ganesh R, Munipalli B. Long COVID and hypermobility spectrum disorders have shared pathophysiology. Front Neurol. 2024 Sep 5;15:1455498. doi: 10.3389/fneur.2024.1455498. eCollection 2024.

  PMID: 39301475 BACKGROUND

• Ewer ER, De Pauw R, Kazkazk H, Ninis N, Rowe P, Simmonds JV, De Wandele I. The Spider: a visual, multisystemic symptom impact questionnaire for people with hypermobility-related disorders-validation in adults. Clin Rheumatol. 2024 Sep;43(9):3005-3017. doi: 10.1007/s10067-024-07071-7. Epub 2024 Jul 31.

  PMID: 39085705 BACKGROUND

• Ernst MJ, Williams L, Werner IM, Crawford RJ, Treleaven J. Clinical assessment of cervical movement sense in those with neck pain compared to asymptomatic individuals. Musculoskelet Sci Pract. 2019 Oct;43:64-69. doi: 10.1016/j.msksp.2019.06.006. Epub 2019 Jul 2.

  PMID: 31277033 BACKGROUND

• Collins Hutchinson ML, Liang E, Fuster E, Blitshteyn S. Autonomic symptom burden, comorbidities and quality of life in women with Hypermobility Spectrum Disorders and hypermobile Ehlers-Danlos syndrome. Auton Neurosci. 2025 Dec;262:103356. doi: 10.1016/j.autneu.2025.103356. Epub 2025 Oct 14.

  PMID: 41118678 BACKGROUND

• Cleland C, Ferguson S, Ellis G, Hunter RF. Validity of the International Physical Activity Questionnaire (IPAQ) for assessing moderate-to-vigorous physical activity and sedentary behaviour of older adults in the United Kingdom. BMC Med Res Methodol. 2018 Dec 22;18(1):176. doi: 10.1186/s12874-018-0642-3.

  PMID: 30577770 BACKGROUND

• Molderings GJ, Brettner S, Homann J, Afrin LB. Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options. J Hematol Oncol. 2011 Mar 22;4:10. doi: 10.1186/1756-8722-4-10.

  PMID: 21418662 BACKGROUND

Related Links

• The Ehlers-Danlos Society has extensive description of diagnostic criteria

MeSH Terms

Conditions

Ehlers-Danlos syndrome type 3; Postural Orthostatic Tachycardia Syndrome

Condition Hierarchy (Ancestors)

Orthostatic Intolerance; Primary Dysautonomias; Autonomic Nervous System Diseases; Nervous System Diseases

Central Study Contacts

Leslie N Russek, PT, DPT, PhD

CONTACT

315-212-2851; Lrussek@clarkson.edu

Samantha Marocco, PT, DPT, EdD

CONTACT

315-268-7622; smarocco@clarkson.edu

Study Design

• Study Type: observational
• Observational Model: CASE CONTROL
• Time Perspective: PROSPECTIVE
• Target Duration: 5 Years
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Professor Emerita

Study Record Dates

• First Submitted: June 15, 2026
• First Posted: June 18, 2026
• Study Start: June 20, 2026
• Primary Completion (Estimated): June 20, 2036
• Study Completion (Estimated): June 20, 2036
• Last Updated: June 22, 2026

Record last verified: 2026-06

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)